Wretched disease : Hi folks This weather is... - PSP Association

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Wretched disease


Hi folks

This weather is really playing havoc with my cbd/ Parkinsonism. Saw the consultant on Tuesday as things have been getting worse quite quickly. He has now suggested I try Levedopa to see if it helps in any way, I am now at.the stage where I will try anything if there’s a chance of some relief from the shaking/ wobbliness.

Although I can still get around the house by hanging on to walls etc ,I need to use my cane or rollator outside as my legs are very weak.I am still having problems getting to grips with what has happened even though it has been over a year since probable diagnosis. Is this the same for anyone else and how do you cope?

I spend so much time alone, there is only so many crosswords one can do and I can feel the apathy creeping in. Ikeep telling my self to get a grip and get out but I’m getting quite agoraphobic as I am frightened of falling and meeting new people makes me anxious. Ok out with hubby or my friend but I have noticed balance does abandon me at unexpected times. Physio is due next week but I’m finding it dreadfully hard and exhausting to do the exercises in this weather and trying to lift up after floor exercise is a real trial, especially getting motivated on my own. I used to be so nimble!

OT has got me a shower board and grab rail for outside is being fixed Monday. I’m 60 going on 90. Thanks for reading my rant but feeling very self pitying today.


32 Replies

Bless your heart Aprilfool! Your very young and I so feel for you! It’s too hot if you feel and are well let alone if you have Psp or Cbd! My Dad tried levodopa and it didn’t help, hopefully others will give their knowledge. Whereabouts are you? Do you have any help? X

Hi Satt2015

I am in the uk-Norwich. I am married but hubby is at work all day. His youngest sister has just started to give me a hand once a week but she already has a lot on her plate.

I am waiting for Social Services to get back vis a vis an assesment and the D W & Pensions people are looking into PIP for me. I will need to find a cleaner and help with showering the not to distant future . Meals are a worry but luckily you can get lots of prepared stuff from most supermarkets- not ready meals! Icky! And we do eat out at weekends so I only have to think about meals for 4/5 days. We have an excellent chippy and a couple of reasonably priced pub come restaurants near us with lots of healthy eating options.

We have no children and my brother lives in New Zealand. I have a brother in the next village but we are a bit estranged.

Thank for replying April, there is lots of help you can get, most of which you will find on here or via the pspa, for example, attendance allowance which is NOT means tested but it is a stupidly long form, age concern will come to your home (at no charge) and help you complete this. I won’t bombard you with information now, you can either search on this wonderful site or come back and ask when you are ready. Someone here will always have the answer x

Thank you so much. I’ll get in touch and see how it goes. Just feeling so overwhelmed with all the stuff to deal with. The OT gave me lots of paperwork to go through regarding relaxation and with all the physio’ s notes aswell I seem to be doing nothing else as it takes so long to process. Plus they only come 3/4 weeks. Can’t get used to having to give up everything I enjoyed-line dance ,guitar, long walks and holidays in Corfu. Struggling to find new hobbies to get interested in but nothing grabs me. My retirement was going to be helping out at the hospital helping patients feed themselves- now I struggle to feed myself! How ironic is that! Jx

Bless your heart, that is absolutely heart wrenching to read

It gets to me, how all Psp patients have led normal active lives

Just keep doing as you are, you sound very strong minded x

Thanks Satt2015

in reply to Satt2015

Age Concern visited me and spent 90 mins. filling out a successful application...

good luck. XXX

The one thing I have to keep minding myself about Larry’s PSP is it is exhausting him. Everything he does exhust him.

At age 70 I find doing my exercise exhausts me. I use to do it three times a week. Now if I do it once a week I feel good.

Try the drug. It might give you some relief. The best thing for it is exercise oddly enough. Keep as active as you can.

Feeling down is very normal. Hope having written here you feel a bit better.

in reply to Jeff166

Thank you. Yes have to off load with people who understand. Normally keep active but it’s getting harder when left hand side aches all the time. Can still manage loading the washing machine- requires a lot of bending!

Hi Jayne

Thanks for posting. It's good to know how you've been getting on.

For most folk there is a rapid deterioration followed by a plateau. I do hope you get the plateau soon.

Is it agoraphobia or sensible fears about risk?

As for Levadopa, it helps some and not others. A trial is not a bad idea, but try not to stay on it if it doesn't help. Three is a danger of accumulating medications which no longer help and that's not good.

You need more day support, can I say that? Someone to be with you sometimes and to get you out. Someone to suggest things to do. Anyone who has their mobility limited will run out of ideas for things to do. It's not necessarily all CBD apathy. Talk to your Social Worker. They have lists of all the resources available and that is what they are there for.

Is there a befriending service in your area? Horrible name I know, but someone who will just assist you with ideas of things to do etc.

Lastly and most importantly...

"Can still manage loading the washing machine- requires a lot of bending!"

Stop trying to bend the washing machine... ;)

It's tough. It's important to keep getting the support in.

You're doing great - salut!

Waiving warmly


in reply to Kevin_1

Thanks Kevin. I read your posts and info regularly. Would have loved to have got to meet up but can’t do it alone especially now. Hope I reach my plateau as soon as this heatwave breaks-used to love it and cope well abroad. Nice dip in the sea!

You’re probably right about being sensible- haven’t driven since diagnosis cos think reactions are too slow.

As for the meds , I have resisted so far but any port in a storm now. Will take your advice on board and my consultant is not forceful.

As for getting out a long lost friend has been in touch and and also a ex work colleague but they both have busy lives so it will be fairly intermittent. Not many people of my age around in our village. I have a befriender call round once or twice a month for chat and she would take me out but ,and I don’t mean this in any denigrated way, she’s quite a bit older and we’re still at the getting to know you stage, and the things she suggests are really for the more mobile. I wouldn’t want her to worry about me falling etc.

Time was I could lift the machine!🏋️‍♀️😂

Best to you and Liz

Jayne x

in reply to Aprilfool20

You sound very on the ball.

It's tough for you both that he has to work. We went through that one.

There is a September meetup in London.

If you can get someone to get you onto the train and meet you on the return I am sure we can arrange for some of us to meet you in London and get you back onto a train to Norfolk.

Just a thought.


in reply to Kevin_1

Kevin, what date in Sept are you meeting up and where please? Thanks.

in reply to Nanny857


It's not in my diary... I will ask Amanda to confirm...It has been at the Brass Monkey a short walk from Victoria Station...but everything is negotiable.

in reply to Kevin_1


Dear Jayne,

I sympathize about not liking the hot weather - It doesn't work for me at all either.

I think it's a stressor and that can't be good for your nerves. With your exercises, would it work to do them on the bed? When my late hubby (CBD) had trouble getting down onto the floor (let alone getting back up) his neuro-physio said he could do them on the bed.

He kept working on getting in and out of bed, on and off the toilet and up and down from his favourite seat on the couch. I figured if he could do those 3 things we had it beat.

I hope you too, have a long way ahead of you at a good (enough) level of mobility.

and PS: I would absolutely take any drug that might have a chance of helping. Makes sense to try!

Big Hug to you tonight XXX

Anne G.

Thanks for ideas Anne. Hope you are coping and things are becoming a little easier. I know what it was like to lose hubby’s pa after 9 weeks of suffering- of course yours was longer but he only went in with a chest infection and picked up bugs in hospital!

Hugs back, Jayne x

Hi Jayne,

You've every right to be self pitying. Yes it is a wretched illness and you are particularly unlucky to get it at 60. My husband was diagnosed at 76 so has had me as a full time carer from the outset. I can't imagine how he'd have coped if I'd been working or if he'd been living alone. How on earth does anyone without family cope? We're in Australia, so I can't really make suggestions, as the support services there would be different. But if it's any comfort to know that others care, then keep posting and sharing and ranting because we all care. And do try to stay active. I'm sure it helps. Best wishes and good luck. Lynne

in reply to nayook

Thank you Lynne.You have to fight even harder when family is few and far between which is why I get down, but having this site is a godsend knowing others are ‘tuned in’ so to speak. Jayne


I’m amazed that you are able to articulate your feelings so clearly and effectively. I know that there are a few other PSP/CBD individuals who participate in the forum, but mostly caregivers. Also, I realize that this disease effects everyone differently. My wife lost her ability to write or type fairly early on. I would do her Facebook, emails, and texts for her and to help her articulate and fill in the details. I think my wife’s anxiety would have been lessened if she did have that ability.

My wife enjoyed having friends over for coffee and she was most happy that way. Being alone is not fun. Is that a possibility?

Keep up the posting. You are not alone and have virtual friends here.


You are so right Bobby, Jayne has real friends here, and I count myself among them. I'm sitting outside Starbucks having a coffee right now, and would love Jayne to be here and we could commiserate or gripe about millenials or how hard it is to find a pair of summer pants that really fit ;-)


Hi Anne, they never fit do they? Used to buy mine in a store called BHS but they’ve now gone out of business. Lucky I bought 12 pairs ( big knickers!) but they are all big for me now as I’ ve lost so much weight-still they’ll do when the incontenance sets in!😄😝 Don’t get me started on millennial- last century was so much more caring( ah! Nostalgia!)

Hugs Jayne x

Hi AP20, my husband Ch was also diagnosed last year(now about 18mths ago, he is 75). He too is terribly unsteady and he says this gets worse everyday (he falls almost daily). I do not know how you manage to cope on your own during the day. We have put many grab rails in and out of this house. This is the only way he can manage to get about. If I leave the house he must lie down. Yesterday he did not and while I was out (20min) he fell and hurt his shoulder. I am impressed that you can write on this site, keep it up as long as you can. Hang in there. The best thing you can do for yourself is some exercise everyday, keep as positive as you can and keep contact with your friends and family. You will need them later on. Take care... val

Thanks crab2093. Some days motivation to exercise is non existent especially when I have to keep on the cane. Next time I see one of the professionals I’m going to ask about a walker as I find the cane inconvenient, having to hold in right (strongest side) and try to manage things with my weakened left side and end up dropping things. I’m finding my world has shrunk, and just go sleep a lot but knowing friends are here might take up posting more, if you can stand it! Jx

Well there are days when Ch is not motivated to exercise. He refuses to use a cane (walking stick) of any type as he does not feel safe. He has a wheelie walker which we take everywhere when we go out. He also uses it when he goes out to his seed nursery or simply watering the garden. It also has the advantage of being used like a trolley with a small basket (carrying tools, or seeds in a watery container, cups of coffee or a plate of food etc). It can also be a seat - useful if you get stuck in a queue.

A chair for the table was an issue for a while. OT got him a high backed firm one but it was too heavy to pull in and he couldn't sit in it and turn because of arm rests , so we bought a rather fancy swivelling office chair and replaced the wheels but that was no good as it did not get close enough to the table so then the OT brought (after a few months) a wheel chair which has been fairly good except that now he tends to fall over one of the front wheels. It is all trial and error. OT will come again this week! cheers ... val

Garth never liked the cane - didn't give him enough stability. But we got a "rollator" (wheelie walker like Val describes) for outside and a lightweight aluminum 2-wheel walker for inside the house. The inside walker made a real difference to his mobility and decreased number of falls. It was lightweight, easy to fold up and moved really well on our floors even though just 2 wheels and 2 'pads'.

The grab bars on walls etc are ok but don't help in the middle of a room.


Yes that’s what I thought about. I bought a rollator but legs are getting too weak to go too far. Use it to wheel the washing across patio to hang out and lock it in kitchen as extra seat. Jayne

Dear Jayne, I so sorry things have changed for you! I hope that new tablets made a difference. Sending you a big hug 🌹🏵🌷 xx Jeanette

Hi Jeanette, thank you. Are you still coming to Norwich next month? Hope you have a lovely break if so. Perhaps the weather will be a bit cooler as it’s really done me in. Nervous about taking the tablets but must try something now. Seeing doc tomorrow to get prescription.

Hugs back, Jayne xx

Jayne, I am sorry to take a while to reply but am still getting used to the website as I am new to it.

My 73 year old husband (CBD condition since 2006) has been taking carbidopa levodopa since 2013 and it is the only pharmaceutical which has brought him some relief. He is now at 900 mg/day and it has made a difference. He has tried adding Gabapentin, Neurontin, Baclofen and Rasageline as well as Aricept and other drugs that can slow the cognitive decline but the only one that he won’t give up is Caribopda-levodopa. He, too, does a lot of crossword puzzles and word games, but has indulged his enjoyment of reading historical books and has taken some pleasure in that. ( He wax formerly active and played golf 3x times a week. ). At night we stream Netflix comedies and that makes both of us laugh. He uses a rollator when he is out and physical therapy has been the only consistently helpful therapy. He has begun a new intervention which has a modest but real benefit: a new at home ultrasound machine called “SAM”. Gives you 4-10 hours of continuous ultra sound vibrations into muscles that have stiffened. We are in USA and I don’t know how widely available this machine is. My impression is that many of those who utilize this website are in UK or former British colonies. If true , maybe that in itself suggests some epidemiological trends in CBD that might be useful to the handful of researchers focused on CBD, PSP And MSA.

Anyway, I think a trial of Carbidopa-Levidopa might be useful for you if there are no contraindications.

Wishing you peace, grace and some giggles along the way, too.


Thanks for your reply,Marilyn. I have been placed on Madopar to see if it helps. Feeling pretty groggy and tired but I have been advised to persevere for the month. Don’t know if the effects are down to the drug or if the condition is getting worse. Find it takes about an hour to kick in then get about 2 hours of relief then like a zombie as it starts to wear off. I am on the lowest dose increasing in a couple of weeks. I don’t really have a problem with stiffness,mainly internal tremors, although the left hand side of my body is very weak with usage in my left hand limited and left leg a bit ‘draggy’. Physio is trying to counter this . Trying to find something to giggle about!! Probably try the new Mama Mia film when out on Sky tv, the first one was great!



Have to get to the new Mama Mia film-- mostly, I want to see Cher play Meryl Streep's mother. That in itself makes me laugh...

Not sure whether Carbidopa-Levidopa (Sinemet brand name) is chemically comparable to Madopar, but did want to share, in case your prescriber did not mention it, that the "sundowning" effect in Levodopa is well established; medicine declines in efficacy over several hours and that is why it is supposed to be taken multiple times a day. Once you get your routine established, it is not hard to remember to take it. If yours is wearing off after four hours it makes me wonder if you are on a sufficiently high dose. But, understandably, you have to start with a low dose and acclimate to it.

Here in southeastern US, we are soggy with rain and housebound, which is unusual but at least we have no hurricanes yet. Once the sun returns, am going to the putting green with my husband. He used to enjoy golf so much and just being on "the green" brings him pleasure. (He is currently very disabled by severe tortecollis, which keeps his chin on his chest and restricts both vertical and horizontal movement, but on some days he can put better than I can!)



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