PSP Association
5,630 members7,675 posts

Atrophy or progression?

Hi my husband Jack was diagnosed with PSP in February 2017. Like so many others it took 2 1/2 years to get the correct diagnosis. My question today ; Jack took a bad fall 10 weeks ago. He broke ribs and his collar bone. Until that time he was walking 2-3 miles a day, going to group therapy twice a week and rock steady boxing once a week

Since the fall he can barely walk. He says he is in too-much pain to go to therapy. My question is it atrophy or desease progression? I don’t want to believe he won’t get strength back but for the first time he is saying “can’t” do things. I’m so afraid for him

48 Replies
oldestnewest

Welcome to this site.

My husband had PSP.

There seems to be a pattern of a crisis causing a sharp deterioration, followed by a gradual improvement, but not quite back to how it was.

We often refer to this as adapting to " the new normal ".

However what is also true is that there is no common pattern in this disease.

Jack seems to have been active so I would guess the fall has dented his confidence and if he is in pain he may be nervous and frightened.

Let us know how things settle down.

Jean

3 likes
Reply

Thanks jean. You are right. Jack was very athletic . A scratch golfer and in a few short months not able to break 100. He is so angry. I fear all his strength right now is fueling the anger : if that makes any sense. I’m hoping once he gets back to PT he will get some strength back. He is so afraid of not being able to walk. I worry about that day.

Others have gone through so much and our journey is just beginning. If he gets past the anger I’m sure he’ll be able to face the future

Thanks for your thoughts

Deb

1 like
Reply

I know my husbands determination to "not be beaten " by this kept him mobile. Anger can be better than depression at surviving.

Everyone agrees on the importance of keeping exercising.

It is heartbrealing but you will manage.

love from Jean x

1 like
Reply

Hi Deb

I really relate to your hubby’s feelings. I was initially diagnosed with CBD last June, now since Feb they say it’s Parkinsons. Either way at just turned 60 I feel cheated of my life. I am able still to get around but not the 5/6 mile walks I used to do. The anger is pernicious but I try not to vent it on my husband as he has a full time job to keep us going financially. I hadn’t planned to retire till 66 so having enforced retirement since Christmas is very confidence draining and demotivating. We do not have family that can help and few friends that are able themselves, so are reliant on the professionals.

I have a physio who comes once a month but apart from going over the exercises she has already given me with a few extra suggestions like adding weights,we don’t really have as good a rapport as I would like. She always seems as if she’s in a hurry to get to her next patient. I’m in the UK and I know NHS services are severely stretched. I dread the day that my mobility goes as I have always been so independent. Hate the fact that that I am becoming socially isolated and it takes so much effort to even get up to the local shop.

My heart goes out to you both that these diseases have claimed yet another person. This site has so much info and people who know your plight.

My very best wishes to you on this unwanted journey.

Jaynexx

Reply

Jayne yes we seem to be in similar circumstances. Jack is having a much better day today. After hearing from so many maybe I really need to be more tolerant of his anger. That is his way of fighting this horrible disease.

I’m glad you are still exercising. Every doctor says that is key to longer, healthier living.

Hope today is a good day for you

Deb

Reply

Thanks Deb. Hate this b****y weather. Can’t get out as too icy and dare not risk a fall. Roll on Summer!

Best wishes

Jayne

Reply

Hi Debralyn

PSP early symptoms often involve weakness in legs. Its not atrophy as such. Most folk can walk to some degree for quite some time, but there is a risk of falls and injury.

He has the added difficulty of serious injury. That will, I expect, heal as normal. PSP is centered in the brain and difficulties are caused by the brain not sending the signals. Not a failure in the limbs, not atrophy.

Have you read the information papers on the PSP Assoc. Website? They really are very helpful.

pspassociation.org.uk/

If you are in the U.K call their helpline. They have local reps. too who are excellent. I believe they do visits to folks homes too and that is a very good place to start with PSP.

I'm afraid you are at the beginning of having to learn about PSP, illness management and planning ahead. Believe me it is so worth it. By doing that we not only are able to give our loved ones the best possible life experience, but we can plan ahead and ensure we have the best support in place as the illness develops.

I am so sad that you and Jack have to face this. Well informed and with good planning you can both expect to have many good times despite the illness.

Anything at all - keep posting here. There are many experienced carers and sufferers who give superb support and advice. They are also very supportive. We all need that.

Wishing you and Jack the best.

Warmly

Kevin

3 likes
Reply

Hi Debralyn:

What did your doc say post-fall? Was he/she supportive of physical activity? If so, can you use that to gently insist on a gradual return to activity? My hubby's (cbd) physio is always so gentle with him - at the same time insisting on progressively tougher exercises. She is well aware he is neurodegenerative (she is a Neuro physio) and that he will lose ground, but she keeps making the case for delaying loss to the greatest extent possible by pushing "some" exercises every day. He can still walk (though with difficulty) and I'm sure its because he hasn't given up.

You never really know; you just try your best. I wish you support and courage.

Hugs XX

Anne G.

5 likes
Reply

Anne sounds like you’ve got a peach thanks for the support

Reply

Anne that’s the other issue dealing with emergency room docs and orthopedics that are a bit clueless when it comes to PSP . Hopefully neurologists has better response. I know he will he’s been wonderful

1 like
Reply

Thanks Kevin. We are in the states but we will be seeing doctors this week. I’m hoping the problem is broken bones and not the psp getting worse. Up until now the problem has been only the falling backwards ( too many times a day) but he keeps going. He did go back to the gym but could only walk a short distance. I believe the dr will give him some one on one therapy... he still doesn’t want to go to group. We need to plan ahead but no one wants to address future they just want to deal with today. Thanks again for your thoughts

Deb

1 like
Reply

Anne G she sounds like a gem! Wish we had had someone like that.

Marie x

2 likes
Reply

I think Jean has hit on the real reason for your husband being unwilling to do anything. He is in pain and scared it will happen again? No comparison I know but I fell about 10 days ago and hurt my side and back. I didn't break anything thank goodness but it certainly hurt. I am only just starting to feel I can stand up without moaning! I haven't got PSP or at least I hope not! My husband did however and fell and broke his arm. He was very nervous about falling again afterwards.

So perhaps give him exercises for his legs for example which are not too difficult, and talk to him and tell him you understand where it hurts but you want him to get back on his feet as soon as possible. Ask him to tell you when he feels a bit better? I am so sorry this has happened to him. He needs it like a hole in the head? In fact you both do?

Both of you need help and support now. A broken collar bone is very painful by the way.

Not sure that answers your question but he will be in real pain. Plus he is scared? You will need to reassure him.

Marie x

Reply

Thanks Marie. I think everyone is right about him being scared. We will see if he will go to at least one group this week.

Reply

Debra be easy with him. Not sure I could do any exercise apart from walking at present! He must have had such a shock apart from the pain?

Marie x

Reply

Your Jack - I have one, too - may be so disappointed that what he was trying sooo hard to keep from happening, happened anyway :( Anger and disappointment, pain and fear - I bet he'll get going again. My husband broke two ribs in a fall and his chest remained sore for a long time.

Reply

Alicia I really think he will but it’s a scary time. He’s had several falls with broken ribs and bounced back quickly. Do you and jack go to support groups? We’re practically neighbors.

Deb. Taylor MI.

1 like
Reply

There is one at Beaumont Hosp. in Royal Oak where we live. We haven't been in a while , but, plan to attend on the 13th bcz Jack's Henry Ford neuro will be the speaker.

Wow, Taylor! Good to meet you ~ sorry it's here:( We have been at this for a while....My husband can, but barely, get around the house with a walker and me walking with him with a sheet wrapped around him as a gait belt. We use a wheelchair when we go out nowadays bcz of the gait freezing. We are 69 yrs. old. Jack started with back pain and one uncooperative leg right after he retired at 60. After a few tests, the first HF neuro sent us to Henry Ford Movement disorder clinic in Bloomfield Hills and he started right out with the PSP Dx in 2011/12? Jack falls all the time and has for years. Since the broken ribs, We've been sewn together at the hip and my vigilance has kept us out of the ER. So, Yeah!!!!! :)

1 like
Reply

We will try to meet you at Beaumont on the 13th Jack is 70. I’m right behind

1 like
Reply

Oh my gosh!!! I just saw this!!! Wow!!!

Reply

It's the 12th!!!! I just checked the card! Dave is the coordinator 248 755 8034.

Reply

Thx. We will plan to be there.

Reply

Ann Arbor here. (mother - CBD)

1 like
Reply

Hi, Etta!

Reply

Hi Etta. So great to have people close.

The only support group I have ever heard of is in Kalamazoo. They are for PSP, CBD I’ll pass on more info when I get it

1 like
Reply

Hi, We too were diagnosed in 2017 - about March. My very active husband (74) insisted for a while that he could do all the things as before. Well he could in his head but everyday he would take a fall as his legs were not keeping up with his brain. Then one day he accepted that he would very likely fall so we learned to plan for the inevitable ( he has a crash hat, wears a whistle, now wears shoes and uses a wheely walker and keeps a 'garden kneeler' handy to help him to get up). We live in the tropics but he now only works outside when I am home,often I will try to work close by (fortunately I too am retired - 68). For a while he was depressed and stayed in bed longer and would not join in but action in living and resting when necessary seems to fend off this awful disease so we try to keep busy. Good luck with the healing.

1 like
Reply

Thank you We are flower gardeners. I think first symptom was jack falling backwards into a large rose bush. I’m hoping to convince him to use the walker this summer. Sounds like you have things under better control than we do

Deb

Reply

Oh my Gosh - one of our firsts was JackD driving the lawn mower into and under my huge rose bush on the fence - he fell with his arm wrapped so I couldn't shut the mower off - 😆 It was so painful getting him and the mower upright!!!!

It was warm enough today to be out trimming runners off that same bush - wow- I had forgotten. It sure is nice having a lawn service now - I would go without food before I would give up my lawn guy!!!!

Going to the walker was tuff. I can't remember how I convinced him to give it a try - maybe not wanting to traumatize grandkids with a preventable fall!?! He has gladly used it ever since.. Same with the wheelchair - I said I wouldn't take him somewhere without it. Turned out that using it gave us so much freedom to get around , we have never looked back.

Walkers are great when decorated with Duck Tape!!!!!!

Reply

It’s odd first falls into the roses we laughed about being clumsy. Now he seems to be able to somehow wrap four or five canes around himself. We have a tiny yard so mowing is not a problem for me. When jack first retired and I worked the yard was immaculate. You couldn’t find a weed. Well with me not so much. The flowers will still look good but the weeds will have their space too.

Thanks for sharing.

1 like
Reply

I enjoy my weeds😆 If they grow well and require no maintenance -- they win a spot!!!!!!!!!

Reply

My son just straightened 3 canes I had set aside bcz they were bowed!!!! 🙂

Reply

Don’t you just hate this bloody illness, another bad night here last night, I agree with Jean she is spot on, sending you a big hug xxxx

Reply

Thank you

Reply

Yes it’s hard but tomorrow could be a great day.

1 like
Reply

Unfortunately, I found any nasty fall or trauma bought on another load of symptoms. So I suspect your husband is suffering from both. A downturn in his illness and still in pain from his injuries.

Steve was always terrified after falling. It was almost a relief for me, as I knew he would try and be careful for a few days!

Find an exercise that he can still do, no matter how small it might be, just to build his confidence back up. I had a personal trainer come and see Steve, twice a week, after he couldn't do his normal exercises. She kept him walking right up until the end, although with me and everyone else, he was wheel chair bound. That kept the strength in his legs, so could always weight bear for me.

For now I wouldn't worry to much, ribs injuries are horrible and take a while to recover. Just make sure you keep him moving and walking as far as he is able.

Sending big hug and much love

Lots of love

Anne

Reply

Thanks Anne good idea about the trainer. Good news today; he has agreed to go to VA group therapy. I know he hasn’t wanted to go because before his last fall he could do most exercises better than most. Keep your fingers crossed for him

Deb

1 like
Reply

We had a horrible fall today - Jack fell at the top of the stairs. I grabbed him by the gait belt and he grabbed the doorway to keep from going down the stairs head first -- then, we were stuck if he let go or I let go he would be a goner😱 I managed to get to my phone out of my pocket and call a neighbor - It was traumatic. We both sat for the rest of the day. If I can keep him waking up till the end, it would be worth every penny paid to a trainer, Anne - I pretty much didn't think keeping him on his feet would be an option...

Reply

We have some crazy stress going on with my father in the hospital - We were heading out the door when the fall occurred - Ithought it would be so easy as we could take advantage of the Valet parking and right into a wheelchair. I hope this little downturn is from the week of stress and we will recover😌

Reply

Steve couldnt walk with me. I know it made him feel good, to walk those few precious steps twice a week. Gave him something to fight for. There are lots of things I wish I had just accepted and not fought. Exercise certainly wasn't one of them, even if it's arm chair gym, anything has got to be better than none.

Lots of love

Anne

1 like
Reply

Very recently he has been unable to open his banana even with first a butter knife then a sharp knife😕 Last night I gave him a candy bar and he couldn't open it at all ~ So today we have dusted off the silly putty the, once upon a time, OT lady left for him. What a different picture I have now - Thank you, Anne. I know things won't necessarily go the same way for us , but, even imagining it could - wow...

1 like
Reply

Oh, how frightening. Brings back memories of being stuck like that. I remember just wanting to cry but knowing I had to sort it !!

You do need a quiet day afterwards.

I kept Chris moving with me until 3 months before he died. He used a wheelchair but could walk with me indoors from the car. He trusted me absolutely and was very determined. One thing I did was making dressing him into an exercise game [ I used to teach young children ! ] and doing lots of basic movements with him. This was when he was much worse than your husbands but might be worth bearing in mind.

love, Jean

1 like
Reply

We walk to "One, two, Buckle my shoe...."

Oh my gosh 3 months - we have spoken of that trust - I can't imagine trusting him😃~ but he says he trusts me in all things - which is a Huge responsibility when traditionally and conveniently I gave the final opinion over to him for 50 years!!!!!

Reply

Chris looked at me as if I was his life-belt ! I suppose I was.

He always said he would " go " when he meant to and, when He had had enough he did ! We'd been married 55 years.

1 like
Reply

Oh Alicia How frightening for you both. Most falls jack fully recovers, so I hope the same for you. 😌

1 like
Reply

I hadn't remembered you were together 55 yrs., Jean!!! We are married going on 51 and together 53! I think my husband will decide, when he has had enough, too. This is not fair.

Reply

No its not but its better to think they can still have some feeling of control as it must be hard to feel so helpless.

1 like
Reply

Hi debralyn, falling over backwards or sideways is part of psp.my wife has smashed the walls in our house many times.one year before diagnosed she had a car crash,was not injured,l believe it was cause by mental and eye function, my wife is in 4 th year of psp ,loss of balance function can catch you out if your not careful, good luck with your husband xx Peter and Kathy.

Reply

Thx you too Jack’s eye dr doesn’t see any problem but he has a hard time setting a glass on the table Falling was the first issue and the grab bars are never in the right place as I’m sure you experience. Take care

Jack and Deb

Reply

You may also like...