PSP and "freezing"? PSP in Africa

[PDDJED]

Hi, my dad has just been diagnosed with PSP. He lives in Zimbabwe. (anyone else out there?) I don't think PSP is so well recognised in Africa. He was originally diagnosed wiht Parkinsons in 2014. But has had lots of falls and has deteriorated fairly rapidly and now the local neurologist thinks its PSP. He seems to "freeze" a lot at the moment and is walking less and less. This is more of a Parkinsons symptom, though....or do PSP sufferers get this as well?

[enjoysalud]

My son, who died, age 55 years old, on May 4th of 2017, was originally dx with Parkinson's (Parkinsonism is what they should have said). It takes a while for the the progression of the disease to be more confident of the dx. He too progressed very rapidly..............eyesight went, speech, choking. He had two bouts of aspiration pneumonia which really accelerated the process.

First symptoms appeared March 2013 and died May 4, 2017. I think his acceleration was faster than most on this site.

My son did not suffers lots of falls, mostly because whenever he walked I or his paid caretaker was right there next to him (my son using a walker).

[PDDJED in reply to enjoysalud]

I am so sorry to hear of your loss. No parent should lose a child and to such a horrendous disease too. It has all gone ridiculously fast for my dad as well but he is in his 70's. He was first diagnosed with Parkinsons in about February 2014 although he hadn't been right for a couple of years. From being a very active and outgoing guy he no longer talks and this weekend no longer walks! We are hoping its just freezing and he will improve but my mother is busy trying to find a wheelchair in the meantime! Not easy in a country where fuel and clean water are not readily available!!

[enjoysalud in reply to PDDJED]

I will keep you in my prayers.

[Meykat4]

My husband has cortical basal degeneration. Sometimes his left leg will freeze. It will be hard as a rock and unable to bend. It comes and goes. Very uncomfortable for him. I'm very sorry for you and your family. This is extremely hard to deal with. My heart goes out to you.

[Marie_14]

I am so sorry that you have had to join this group but you have done the right thing. The people on here are very kind and supportive. You might see lots of suggestions which you may not be able to do but lots that you will.

My husband who died in February had a lot of freezing. I had read that if the person is ex-military which he was, that saying left right, left right, would stimulate the brain to remember how to march. I did it and it worked. You could try it anyway as people tend to remember odd things? Eventually of course he just couldn't move his legs or feet.

I wish your Mum good luck with her search for a wheelchair. However that is only the start with equipment. Eventually he will be unable to stand unless he has an aid and if he can't walk that might be very soon? Everyone says plan now for the future and they are right as it can progress very fast. So start planning now. Has your Mum got help to care for your Dad? She is going to need it.

Take care.

Marie x

[Wardy01]

Hi

Similar story to mine, mum wrongly dx,

2015. With Parkinson’s. Started to have falls etc and broke her hip, we then found out it’s PSP. A shit disease and no cure or medication, it just gets worse.

Sorry to be so blunt, but that’s the truth.

My Mum is in a wheelchair all the time now, can’t do hardly anything unaided. Not a lot know about PSP but this sight is so useful.

Good luck

Martin

[aliciamq]

My PSP husband freezes all the time!!!!! We have a ritual to get him to move. He can only get in in five or six steps before he freezes or starts running to a fall - I walk with him all the time now using a gait belt or a sheet wrapped around him. We take a deep breath and count out loud🙂

[Demziebee]

Hello! I care for a lady who has PSP. I don’t know a lot about it just yet. She freezes a lot whilst walking also ☺️ She had a fall recently and the freeze has accrued more regularly than it was before x

[PDDJED]

Thanks all for your replies. Particularly useful Marie, is "Left Right Left Right" suggestion. Sorry to hear all your loved ones also struck with this horrid disease and also so sorry, Marie, that you lost your husband recently.

It's quite a shock for me to read all your responses as I guess it has made me realise how serious this disease is. For one it has a very different prognosis compared with Parkinson's and my dad may not have much longer. I also realised that I need to get to Zimbabwe to help my mum with this next phase of Dad's illness.

One other quetions I had is what drugs everyone is on here. My dad is on Stalevo and Clomazapam (not sure of spellings). He also has one agonist pill and one other Parkinsons drug with all day release. Does anyone get prescribed anything else more useful to PSP here in the UK? I am guessing not, but I am interested in what works for others...even if its ibuprofen? I am hearing something about a gel? Also what is the name of a good liquid thickener?

[Marie_14 in reply to PDDJED]

Fingers crossed that it works for your Dad and helps control the freezing. It won't cure it as there is no cure.

I am glad you have decided to go to help your Mum. She really will need that help. You will be shocked to see your Dad go downhill but sadly that is what will happen. However you will have the comfort of knowing you did your best for him and your Mum?

The Parkinson's medication my husband was on was Sinemet. It had no effect. That's not to say that it won't work for your Dad. I think the one that releases during the day is probably that.

Everyone is different with symptoms in one person unlike the next. They also don't like to say how long a person has left. At a guess I would say your Dad is entering the final phase. Having said that there are people who defy logic and go on longer than expected. Can he still talk? He will also have a lot of coughing. One piece of equipment you might consider is a suction machine as it is very distressing when the choking starts. That helps remove the saliva.

I think the thickener we used was Thick and Thin. My husband hated it! It looks like wallpaper paste and must be awful to drink. It was totally useless in tea and he loved a cup of tea.

Good luck to you and stay in touch. You are going to need support and friends. The people on here will be there every step of the way.

Marie x

[2660Carol]

Hello PDDJED my name is Carol My husband Ben had Parkinson in the beginning only 3 months before PSP was diagnosed he passed away last Jan Ben froze a lot walking was bad for him I had to hold him up by his shirt to walk walking did become less and less until he became bedbound Ben had issues with the nervous system he would have a lot of panic attacks to stop the attacks we had to put him out in the cold to bring him back or put cold rags on him all over swallowing got bad in the end thickening got thick in his drinks the 4th month after he was diagnosed he just gave up didn't eat for 10 days and slipped peacefully into heaven with his surrounding family around him Ben suffered with this whole disease total of 6 years they say that's the average time this terrible disease takes your whole being away from you your completely in someones care which was be his wife Carol I miss him dearly but Im glad I took care of him Carol2660

[PDDJED in reply to 2660Carol]

gosh Carol, it does sound tough and I am so sorry you lost your husband who you obviously cared for a great deal. 6 years is a long time to suffer. It sounds like it was a hard way to say goodbye.

[Hidden]

PSP isn’t well recognized anywhere. The freezing is normal. There are all kinds of possible scenarios the disease could follow. Some people get a symptom others never have. There is no step to step progression. Everyone is unique it seems.

I use the little magnifying glass icon at the top right to search this site for previous posts on conditions using a word like freezing. Old post will show up. Lots of information from past posters is available.

[PDDJED]

thanks Jeff

[NHGrace]

Yes, as others have said, re freezing is a common part of psp. My 77yo mom was diagnosed may 2016, had a walker by November, and we are now getting a wheelchair. She freezes a lot, especially getting out of the bathtub, and it is worst on her right side. The right hand also "sticks" and cannot easily let go. She's tried carbidopa levodopa (Parkinson's meds) but with no noticeable effect. We use biofreeze for her back pain and stiffness. Most of the thickeners are terrible - "thick & easy" is good enough. Anyway, onward and upward. There's a wealth of knowledge on here, so you've come to the right place - welcome.

[PSomani]

Hi. My mom has PSP and we stay in India. She too was misdiagnosed initially with Parkinson and then a senior doctor diagnosed PsP. From what I hear, read and understand - there is no sequence of symptoms. But yes, walking and balance goes for some, vertical eyeball movement gets impacted and sometimes horizontal too leading to frozen eyes. Once speech gets impacted and swallowing is difficult , weight loss and muscle atrophy start which have their own share and at this time doctors will recommend at PEG for food/ calorie / protein intake .

Don’t want to scare you but you need to have the care givers prepared and have relevant people in place in advance . If possible , keep the physical activity up like walking and some brain games .

Good luck in your efforts .

Anshuman

[steph02]

This sounds a bit like me . i too was first diagnosed with atypical parkinsonisms way back in 2008 they changed the diagnosis in 2012 to atypical psp I actuality think that it is pure akinesia with freezing of gait. I do not take any drugs for this condition ; simply because nothing seems to work. Well the good news is that it is slow in its progression although I fall about 1-2 a day I hardly ever seem hurt myself and I continue to live an independent life style although my wife might disagree with me on his point.

[Patienan]

I was diagnosed two years ago as having PSP, and and not Parkinson’s. I do have some doubts about this because I have been taking two medications which are commonly prescribed for Parkinson’s and do definitely benefit from them, whereas most health professional specialists in the field say that neither have any effect for those with PSP. However, neither of the neurologists will agree that I do not have the dreaded PSP although the present one says that I do have a variant of the disease but with some elements of Parkinsonism.

I now know that whatever it is, it began some years before I realised anything was wrong, about 5/6 years ago when my handwriting deteriorated, but I then put this down to eye sight and spent a lot of money buying new specs. It was not until my mobility was affected that I consulted my GP because I had begun to ‘freeze’ and felt that I could not keep up my ability to stride out with our walking club. GP did not seem very concerned ?and just ordered further X-rays of the spine, feet etc (I had had osteoarthritis for some years and also had bunions on the feet). The results of the X-rays showed a little deterioration but not enough to account for the increasing immobility. I asked if an MRI can would show up soft tissue damage but he didn’t think this necessary. After two years of this, I got really quite angry and he agreed to refer me onto a specialist.

By this time, I had had a couple of nasty falls and became nervous about falling again which increased my tendency to freeze. Nowadays, I rarely go out without a mobility scooter, either the lightweight one which breaks down into separate pieces so as to fit in the bot of the car, or a bigger one which I use to go out on when we don’t take the car.

All in al a very long way of saying that freezing and PSP do go together!

Best wishes, Ann

[PDDJED in reply to Patienan]

Ann and Steph, thanks for your replies, its good to hear your accounts of this disease because it is so confusing. You both sound very brave and yet are so matter of fact about your illness and its wonderful that you can share your experiences because it is helpful to so many of us. Thank you.

[tkmama in reply to Patienan]

Ann, the PSP Richardson's type is helped initially by by the Parkinson's medications carvedilol levodopa and amantadine. Did your doctor suggest what type of PSP you might have?

[Hidden]

My husband would freeze when trying to chop wood and throwing the dogs ball.we live in British Columbia Canada and yet to find any medical professionals other then the neurologist that diagnosed him after many years that have dealt with a PSP person.

It's a lonely road.

Dee in BC

[Patienan in reply to Hidden]

It is, Dee, even here in the UK. Very few nurses or GPs know about PSP: we have recently moved and my new GP who is very friendly, young and nterested in my condition, referred to ‘people with Parkinson’s often find....’ and I had to remind him that my diagnosis is PSP. However here in Kent we are so lucky to still have a specialist nurse, who had to take a fresh university degree course in neurological diseases in order to convert from her RSN nursing qualification; she is absolutely fantastic and I don’t know how I would have coped without her: we are only about five miles from the county border with East Sussex where there is no such service.

Sorry about the underlining, obviously I’ve hit a key without realising .

Anyway, I do hope that regular looks and postings on this site will help you feel a little less alone.

Ann

[tkmama]

I was diagnosed in Februrary 2018 and freezing gait was, is my top complaint.

[DeborahRamsden3602]

Hi. So sorry to hear about your dad. My mom has PSP. We live in SA...in KwaZulu Natal. And I agree...no one here seems to know mich about it. I've done most of the research myself to know what to expect next and with alot of advice from the group, I think I now have a better understanding. My mom is walking but with assistance and very slowly. She will often say to me whilst walking STOP cos she's frozen. So we wait a couple minutes and then carry on. He must just keep moving but not himself...with help. 2 falls and 2 fractures later...and I realise that it's the falls that have made my mom deteriorate so quickly. Urinary retention is starting so I had to catheterise her yesterday. Call hospice in for support and to rent equipment at a small fee. I'm sorry...this disease is truely like no other I've known. It's gone from being never heard of to all we hear of and taken over our lives. Hang in there. Love and strength. Debs xxx

[Dancingbirch in reply to DeborahRamsden3602]

Hi Deborah, I hope you don’t mind me getting in touch so many years after you posted.

My husband has PSP and we're considering moving to KZN Midlands and are wondering what care/support you were able to find there? Did you find a neurologist who understands the condition? And what about Neuro physios, speech and language therapist and palliative care specialist?

I would really value hearing about your experiences

[Janet5]

Yes I get freezings quite a lot and yet when I am walking without any turning or doorway orchange in ground levels I am fine and I definitely have ,PSP . I think there are many symptoms with are similar to Parkinsons but I never had a shake and do have problems with my eyes. I live in the uk,

.

[rmdlcook]

i have have been freezing since before my diagnosis with PSP. I have been going to a movement specialist He is a neurologist that specializes in diseases of the brain that has to do with motion. i have been taking Neupro for about a year now it comes in a patch that you wear every day. I have been taking it for about a year now.

i have been falling more often and but my doctor told me that i have been getting too much dopamine. from the the patch. To know for sure you need to have a DAT scan done. this will tell you for sure if you have PSP or Parkinson's or MSA,or CBD.or of the neurological diseases.

If you have any questions please feel free to ask me. I know it is scary and I hope you father doesn't have it. Its a terrible disease and hate it everyday that i have it. I wish you both well.

Rick Cook

[Debspottery1]

YES!!! My husband freezes while sitting down- and while getting up. Usually in front of the TV - sometimes while trying to sit, will be stiff and leaning forward, and falls smack down on his face. He was a performer, and did this while on stage, others of course, thought he was drinking.