I can't walk without my legs giving out on me, can't move my right leg or foot seems like it's stuck.
Can't stand up by myself.
Meds are not helping.
This has got me really scared.
Does PSP/CBD have the ability to stop you walking within a few weeks?
The disease is different for everyone. Losing the ablility to walk can happen. Have you had physical therapy? Do you use any kind of walking assist like a cane or rollator? The only “treatment” for PSP is exercise. It helps keep one mobile.
We found that sudden dips in ability tended to reverse themselves, although only to some extent and for a while. I second Jeff's suggestion that exercise and PT can help. We had good results from the LSVT Big program (designed for Parkinson's patients), modified a bit for my sweetheart's capacity. It improved his walking and balance to an astonishing degree. I hope you find something to help bring your strength back.
Best, Ec
Hi thanks, my blood pressure has also dipped quite low is this normal?
Normally 150/90 now 120/78.
I don't think that's particularly low, is it? Unless you are feeling suddenly dizzy on moving, I wouldn't worry about that
Ideal blood pressure is 120/70. For older people 150/90 is acceptable. Unless you feel dizzy I wouldn’t worry about it.
I noticed my Dad who always had high blood pressure,while he had psp it was normal or low. It could just be one of the weird side effects. It could make you dizzy though.
hi sANNUY7
i agree with what e,c has saifd
lo l jilk
xxxx
\[spsp [person in uK
Hey Jill!! So glad to hear from you!! Thanks for chiming in. I think of you often. Love, Ec
I agree with EC. Try and get onto the exercises she talks about. Yes, there are sudden dips with PSP. Normally brought on by a fall or some sort of trauma. Suggest you talk to your doctor or the OT.
Sending big hug and much love
Lots of love
Anne
Am so scared with the progression of my symptoms I feel I am going to be unable to walk soon.
I have nothing in place at home for this so going to be tough for me and my partner.
I feel I am going downhill fast.
It must be very scary for you. Of course it is. I really am sorry you have to face this.
Preparing as well as you and your partner can so you can safely stay active and comfortable is important. Even when walking becomes too much, it need not mean you can not be out and about. There are many types of assistive devices to help. Everyone's progression and circumstances are unique, so I will not generalize further, but do hope you have access to a decent occupational therapist, or the equivalent, who can give you practical advice about how to address the difficulties ahead.
Are you in the UK? There are folks here who can tell you more about what support may be available to you than I can.
Meanwhile, hang on. Stay in touch. We care. Love and peace, ec
I hate to tell you but that is what happened to my husband before being diagnosed with CBD about 3 yrs ago.
Hi did your husband struggle to get in/out bed and generally moving about?
Feels as though all my body is weak and I feel dizziness.
I am not sure what it is but boy it's took me down.
Seems each given day am getting less and less able to move.
Hi jafarra I don't write on this site very much but I do read all the posts.I was interested to hear that your husband has cbd as it appears that most loved ones seem to have psp. My partner has cbd and dementia does this go hand in hand? I would be very interested to know your husbands symptoms and how you are dealing with them. My life seems to have stopped as my partner is chair bound and unable to do anything for himself. Would love to hear from you .
Kind regards Cilla
Cilla,yes you have just decribed my husband. He has been in a lift chair for more than 2 yrs unable to do anything. His arms and hands have pretty much stoped working. He can eat a sandwich or finger type foods fork and spoon are out. The dementia is getting worse. He is hung up on pooping. Asking me what channel the t v has to be on to poop. I still put him on a potty chair for that even though he wears a pull up to pee. He wants to ho poop all the time oh my its hard. He has good days and bad day on his memories. If you want to know anuthing else let me know I need to know what you aregoing through too. Love Jenny
I've also lost my appetite and hardly sleeping maybe 2 hrs a day I feel tired but when I close my eyes my mind won't switch off.
You don't mention the drugs you are taking, if any. Perhaps it may be worth checking on side effects caused by any drugs you are on ! ?
Just a thought.
Hi Stanny 7
My husband also cannot sleep. He's lucky if he gets a couple of hours a night. Like you he is exhausted all the time, but just can't get his brain to stop either. He does take Ambien sometimes and that might give him a couple extra hours, sometimes not. Mornings and evenings are the worst times for his walking. During the day his legs feel week and he can't walk long distances without being worn out. There are times where he can't walk, but so far that hasn't lasted. Unfortunately it's all part of PSP and probably CBD also. Everyone is so different, the not walking might be short lived right now. Please don't let that stop you from doing things. There are other ways to get around, and the more you keep your brain busy, the better.
LynnO
Hi stanny 7 this is my first post. My mum has cbd and She suddenly stopped walking after getting a UTI she hasn't walked without assistance since . It just seemed to happen overnight I kept thinking she would be fine after a course of antibiotics but no. Her right leg freezes often when I walk her from room to room especially in doorways her consultant suggested counting or singing a tune until the freezing stops. This works well for mum. However when she is really tired Her legs just give up altogether and I can't walk her anywhere it's scary she just gives up I am surprised we haven't both ended up in a heap on the floor yet. I am so sorry that this is happening to you it must be very scary for you Take care
Well I seen my parkinson's nurse today she was good.
I told her I was worried it is a PD plus then showed her my symptoms she said she's been a PD nurse for 25 years and my symptoms don't match PD plus and that I have to get that worry out my head... I told her that's what has been consuming my thoughts I must have asked her about 3/4 times... She said it's needless worry.
She said my symptoms remind me of a guy she had under her care with what they called a spoon hand he was 33 when DX'ed.
She said that with the response to l dopa even if I am only getting 2 hrs on that's gd (I disagree as I am practically unable to do anything while off) and she has forwarded me for physio.
We also discussed DBS and I said I'd do it in a heart beat she has forwarded my name and said it's a 2yr waiting list and that's just for an assessment.
She said I need to get my mood fixed because It is not good atm which effects everything she is going to give me a antidepressant.
She gave me another PD medication called rasagiline to try.
All in all a good visit.
Although that being said my walking is still so bad when off even if it is PD I can't go anywhere in fear my leg goes off.
Hi Stanny7. Sorry to hear about your symptoms and the suddenness of their onset. Have you been given a diagnosis of PSP (or CBD) or do they think you have Parkinson's? Reading the trail of posts in reply to yours, it sounds as though you are being treated for Parkinson's and for many PSP patients, the drugs used for PD don't work. My partner (with PSP) went from heady, to holding onto my arm when we walked, to a stick, to a walker (4-wheeled), to stopping walking altogether 18 months ago. All the way along the best help we have received has been from the occupational therapist (OT) who has always come up with suggestions and equipment to cope with the new levels of incapacity. For him, physiotherapy did nothing to stop the progression ( or so it seemed), but tried to find a good OT and they will make an incredible difference to your quality of life. Hope this helps!
Thank you for the reply, Yeah I am currently still being treated for Parkinson's (Abnormal DAT scan) when my meds work I can walk fine but still have this sensation of weakness throughout my body.
The meds wear off within 2 hrs and I am left unable to walk more than 10 yards and can't walk by myself it also slows down my good left arm... Until my next meds kick in so I have to lie down for approx 2 hrs to get going again.
I seen the Parkinson's nurse yesterday and she believes it is just PD.
But why would I be unable to move my right leg with Parkinson's? And last night in bed I could hardly move my left.
I have been to the doctors on numerous times in the last few weeks but they believe also it is just my Parkinson's they have took a urine test and blood tests (still waiting to hear from the blood test).
Am not sleeping well either.
If it's not PD/PSP/CBD what on earth is it?
It's the weakness this that has got me worried the most because it doesn't tie in with any of these diseases.
Stanny 7 boy that sounds so familiar to my husband Ben he passed away this passed Jan 2017 with PSP first started out with dementia Parkinson for 5 years then 2 years of all what you described difficult walking swallowing falling legs would give out I Carol walked with him for the last 2 years holding on to his clothes to keep him up Ben finally got chair bound and bed bound Bens nervous system went haywire most of the time We had to shock his system by putting him out in the cold to bring it to a good level a lot of times to the end Home Hospice was there for us take care Carol2660
I feel so weak today weaker than I have ever felt not sure what is wrong with me.
Could it be something else underlying be effecting me, the doctors wwould have picked up on it? Had urine and blood tests done.
I don't know what to do.
Does dizziness have a part to play in PSP/CBD?
In the course of about a year dad, has CBD, went from slow gait to not walking. At the end of his walking his Phy Therapist said he was expended about as much energy taking 3-4 steps with walker as a healthy person would running a block. It was then he went to wheelchair full time.
Today, about 16 months later, he can barely move his legs and right arm, left arm maybe 40% use. He has constant muscle pain which Tylenol does nothing for anymore. Last Friday his doctor decided 1 more week for further pain evaluation then possibly start Tramadrol dosage.
Ron
That’s about how it went for my husband Chip . He really can do nothing. It’s very hard. God Bless
My husband had a very late diagnosis of CBD. Heart problems and possible Parkinsons diagnosis masked a clear diagnosis, along with a mengioma found along the way.
I got him to join my gym and that helped his mobility for about 18 months, but in that time I watched as one leg became obviously weaker than the other. I watched him walk down the street for his walk clutching a walking stick as if he would hit someone, rather than using it to walk! He took a new walker to respite, but still insisted he did not need it.
What did help my love who always had 2 left feet was Dance for Parkinsons classes. He rarely danced with me in our 50 years of marriage, yet he got up and obviously enjoyed this class. I would recommend it if you can find one. If there isn't one locally, talk to your Parkinsons nurse and get her to start one! You will meet with others who are struggling more or less as you are - and you can take your partner and hold on to him, and enjoy it together. I found it a happy and thought provoking event too, seeing how others were coping with similar problems to ours. Made me more tolerant too!
My husband also suffered from a dropping BP when he stood up. As a result, all his BP meds were stopped in case he collapsed.
Get your GP to check whether your now lower BP drops when you stand up, so that s/he can consider if you need medication for a low BP. If that is the case, it may help you feel less weak.
I can understand your panic and frustration at not finding a diagnosis that seems to reflect your symptoms. Don't think that is too unusual as all the Parkinsons Plus related illnesses are rare - although not on this site!
Have you been referred to a neurologist and have you had MRI or similar scans? My husband's doctor was slow to consider Parkinsons, and yet I asked for further neurology assessment as I was not getting answers to my questions and fears of symptoms I was seeing.
Make sure you find someone who can help and support you in your fight, and can up the battle if you find it hard. Everyone on this site will give you help and advice, and probably can contribute far more actual knowledge of PSP/CBD related problems than many specialists!
So pleased you found this site! Keep in touch as long as you can!
Hugs
Jen xxx
MSA presents with dizziness and blood pressure drops, I understand🙂
Hand rail walk way thing
Can anyone offer me advice on how to do my bit when I live a long way away from my mum?
How much worse can/will it get :( 
Mum can still make me giggle
My dad has psp for six years. He sleeps a lot , can barely walk., or talk. He takes mostly purée foods. I am wondering is the last stages.
