PSP Association
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Sudden Changes

In the past two days Dan can barely stand on his feet. We generally use two people to walk him to bed and up one stair to a chair that carries him to the upstairs. One in front holding his hands and one behind to support him. If we help sway him from side to side he can move his feet. Now he is barely able to help us get him into a wheelchair.

He has a tough time getting food to his mouth, but manages well with small sandwiches and cut up fruit . Tonight it took him 30 minutes to eat a small sandwich. Any ideas. ? He has had steroid therapy once a week to lessen the inflammation in his brain, but that was 4 days ago.

I must call to get a hospital bed and put it in the living room as well as some type of equipment to get him in and out of bed. Does anyone have any suggestions. It’s so scary that this is happening so quickly . He looks miserable and I think he was really depressed today. I could not get him to answer me with a head nod or hand gesture. He was on an antidepressant at the beginning of his journey and it did not seem to help. Has anyone had any success with antidepressants

Thanks you for your support . It’s nice to have somewhere to turn .

Karyn

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Oh dear, Karyn. Why does it all have to happen at holiday time!

Hang in there! Maybe not essential to worry about food intake. Let him eat what he can, but see if he will let you help a bit more. My love would not!! Try and keep fluid up. Jelly is part of 'fluids'.

Try thick puree soup, mashed potato, puree foods if he will let you. Generally, when it became difficult to eat, my love started with pudding and had savoury after if it was interesting enough! He ate a lot of jelly, icecream and yoghurt and soup in the final stage. It was as much the inability to complete the movement that was hard, not necessarily the swallow reflex - although that did follow after a week or so.

Cups of tea were much loved but spent a long time halfway there! He was very cross if I tried to help! He did not seem to realize that he was not completing the action.

So try and make life as easy as possible for him without appearing to do so!

You may find he is not so keen to get up as it is exhausting. Try and talk to Hospice as soon as pos, as they may be able to help both of you faster than Dr or hospital. Personally feel hospital likely to be waste of time!

Take each day as it comes and make sure you hug, kiss and love him! Doubt anyone can give a timeframe, but may be this is not long.

Thinking of you both, and your families.

Hugs

Jen xxx

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That’s Jen, he has been healthy and does not choke yet . Sometimes he sounds congested when he coughs. He sometimes coughs while in bed sleeping.

It is heartbreaking to watch. Almost no communication . Thank you SO much for your reply. I appreciate it. These days are exhausting. I feel almost void of emotion,

Karyn

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Dear Karyn, Sorry to hear there's a scary new phase :-(

I agree with Jen about food: let him take the time he needs and take what he wants. At this stage of the game, "perfect" nutrition is not my top priority. My hubby loves Starbucks (we're on the west coast of N America, so of course!..) so I get him a mocha frappucino every day! And if he isn't answering with thumbs up/down or head nods, what about hand squeezes - can he do those? The direct body contact with him - your hand to his hand - is also reassuring.

My hubby started an antidepressant (Zoloft) in October. It is proving helpful in giving him that bit of "lift". He smiles more, is more calm and answers "good" to how his day was, more often. (He's mostly non-verbal now, so I figure that's good.)

Do you have access to an OT at your regional/local health council, or whichever health group is closest to advising you? We have local health authorities which have a community/home health division who consult on home care issues. Usually a nurse, but there's also physiotherapy and occupational therapy - and they are good at identifying the kind of equipment needed and where to obtain it. In our city (because we're in an urban centre) the Red Cross Society runs a volunteer "loan-out" program with some commonly used equipment available for "free" loan (you donate what you can). Not sure what you have where you are but ask every agency, every clinic, every nurse you deal with until you get answers on the equipment you need.

I wish you good results and some quiet moments to breathe (!)

Hugs xxxxx

Anne G.

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Karyn I don't know if this will help but there's an organization in Waukesha called Katys Kloset that loans out equipment at no cost. We are using them for a wheelchair for my 5 yr old granddaughter as she's having surgery on both legs. You just return it when you no longer have the need.

Sending prayers your way and keeping you in my thoughts.

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Hi Karynleitner !

We are using this palliative medication against depression and insomnia from 3 years ago.

In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a physician.

Recently she pay close attention after dinner to a light TV show. Surprisingly this activity has significantly improved her relaxation and rest at night.

Other health problems:

She have had some episodes of constipation that have been corrected by applying an intensive Mediterranean diet based in fruits and vegetables and helped by the drug "Duphalac" (an oral osmotic laxative).

Drops of artificial tears to the eyes upon request (more often as the disease progresses). If you have problems applying the drops "Optrex spray" is an alternative.

Hugs.

Luis

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Get a hospital bed downstairs as soon as possible. I too resisted it until I realised how it suddenly became dangerous.

I used to feed Chris to help him. Fortunately he was fine about this. He never got depressed so I can't help there.

It is upsetting how quickly things can happen. I certainly had that and I know how frightening and exhausting it is. We just have to be strong and flexible.

Thinking of you, Karyn. love from Jean xx

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Hi Karyn

Our experience is of a downturn and then a slight recovery of function over the next week to ten days.

I would certainly get speech therapist or SALT nurse in to advise on feeding and perhaps thickened drinks if Dan has difficulty swallowing.

Also an OT - A turning stand helps a lot with transfers into wheelchair and wheelchair to bed etc. They will do a house assessment and if you are in the UK they will loan any needed equipment including a stairlift and hospital bed. If you are getting your own hospital bed you might like to look at Invacare - they are very well made with the soft form mattress which is one step below and air mattress for bed sore prevention. Super comfy too. They are 'best' nursing home standard - e.g. better than most nursing homes have.

Our Liz was on Citalopram. It helped to calm her. We stopped it recently and there were no changes. I had to remind clinicians that the PSP 'flat affect' e.g. being a little emotionally flat was a neurological presentation because they often saw it as low mood. The SSRI's like Citalopram are very good for depression and recent research shows that they are as effective as some of the ones which were thought to be 'stronger'.

I do hope this helps a little.

Wishing you both the best for this year.

Warmly

Kevin

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Kevin,

Thanks for your help. I am in the US. Medicare will probably help pay for a bed. I can talk with a provider and request the brand you mentioned. I must pay for any care homecare until be needs hospice. I am very reluctant because of the cost, but may have someone come in once a week to bathe him and give we a break.

Dans problem eating seems to be opening his jaw. Does that seem crazy ? He has coughed from time to time, but rarely. Does Liz have trouble swallowing?

A turning stand may be a great idea. Sometimes we need two people to help hold him and one to move his right foot. If he stands on it sometimes he plants it firmly and cannot move it. Other times it’s to the side and lifted , not supporting him at all. Last night he slipped down on transfer with my two sons. They just could not move and turn him into the wheelchair. I am blessed to have them here.

We do have a stairlift, but with its location it is a struggle for him. We now must put a hospital bed in the living room. I hate the idea, but it is best for him.

Thanks so much for your help. Best wishes for you and Liz in 2018.

Karyn

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Hi

Yes, its an expensive business. I see Invacare sell in the U.S. there will be other good products there I am sure. Invacare caught my eye because they meet quite stringent standards for health care products as set by the EU.

A turning stand was a fantastic thing for us. It enabled me to continue to transfers way past what I could have done alone.

Yes, the jaw opening problem seems to be common with PSP. Liz can only manage a centimetre or so now (1/2 inch). So all of her foods are liquid.

Swallowing is another common issue. Swallowing is a two step reflex and the swallow becomes slowed with a gap between the two steps. This slowed closing of the epiglottis can allow liquids or foods into the airway. One solution is to thicken liquids so that they move slower giving the swallow more time.

'Resource' by Nestle is a good one. Instructions on the side and it just makes fluids a little thicker. A fat stray can help and later we found a feeding cup easier to use.

I do hope this is helpful.

Best wishes to you both

Kevin

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Thanks Kevin, I did find Invacare in the US.

Can you please explain a turning stand.

Can Liz handle the feeding cup at all herself, or does she need help?

Also, Dan coughs at night while sleeping. Do you think this is related to the PSP?

Thanks Kevin, for sharing your knowledge and experience .👊 .

Karyn

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Hi Karyn

I always get that name wrong - Its a Rota Stand - We had the Rota Stand Compact in this link.

activemobility.co.uk/stand-...

It was very helpful. Essentially the person, with assistance, pulls themselves up onto the stand which then swivels to a wheelchair put at the side (for example) and then they sit. No steps need to be taken.

Liz managed a feeding cup for a long time. She can't now though.

We found one with a conical inside. It takes less tipping and a larger opening allows a wide straw to be used and it's easier to get the liquid out is it is thickened.

essentialaids.com/ornamin-o...

The lid with the large opening is the Ornamin 807. The lid in the link I gave you is the standard size opening. Which we found a little small for thickened liquids ans puréed food.

By the way these are super good quality mugs.

PSP can cause coughing. With Liz it was difficulty swallowing phlegm and her throat not clearing properly.

Wishing you both the best of it all

Warmly

Kevin

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Karyn, I'm pretty sure our husbands qualify for Hospice help!!! They will bring everything you need and they take care of Medicare - I have not called, yet. I think they will help with bathing etc. Anything and everything I say can be wrong until I get an appt with them, I don't know for certain. Making the appt will be/is the tuff part 😬

Jack is always trying to walk with his right foot sideways... I do a lot of coaching! He can go up and down stairs pretty well(very slowly with coaching) - getting to the stairs is the problem!?!? The Gait freezing is awful and exhausting for him 😑 He eats fine but small amounts. A few months ago, I wanted him to go on a diet, but, now he's done with one small platefull - He manages to choke on his water just once in a while - we are lucky, so far.

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I have asked about hospice. It appears that guidelines state that it is generally ordered when patients are not exspected to live more then 6 months.

Dan has no infections so we have no idea what will be next. I do notice that a decline can come suddenly out of the blue.

I have been told Medicare has a palliative program , but cannot find information . Home healthcare including physical therapy, speech therapy etc, is offered temporarily (through Medicare) when ordered after a 3 day (or more) hospital stay.

He’s doing a little better . I have resolved myself to try paying for 4hours of care once a week . He does not seem thrilled,.

I am now making his sandwich’s thin or cutting them-in pieces. That seems better.

Dan Good foot turns sideways or down when he tries to stand on it. A nurse who observed it said it looked like dropsy and physical therapy could help it. Now , the challenge of getting him there.

Please keep me posted regarding hospice. I know they can order equipment too.

Thanks, good luck.

Karyn

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Are you by yourself with Dan at home, Karyn?

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At this point we do not have professional help, but my children are on board when possible. I have two sons, 19 & 30 here, who help get him into bed etc.every night. When one of them is gone, one of our daughters comes to help. At this point we try to have 3 people to move him. Once we get a hospital bed and put it downstairs , it will be easier and we can get by with two. Sometimes he does OK, but if his legs don’t work, he begins to go down. He is terrified when he falls. I am trying to not let that happen,

I am the only one who dresses him and cleans him up. I am now doing it with him in bed. This will be harder because he is doubly incontinent .He does not get up at all now, so once we get him downstairs it’s ok. I am often unable to leave the house for 10 to 14 days, which I hate. By the time anyone’s home from work, it’s dinner time and I don’t want to go out. Especially in this cold. We’re working on that.

I have finally decided to hire someone once a week to bath him etc. I have to pay for 4 hours . Hopefully I’ll find someone good enough that I’ll ferl comfortable leaving. Unfortunately , I don’t think Dans onboard, but we will work it out.

Thanks so much for your concern.

Karyn

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When Chris was at that stage I found someone who I could leave Chris with. She showered and dressed him and gave him lunch so I had 4 hours free to meet friends. It was a lifesaver for me and well worth the cost.

The need for a break is essential, I think.

love, Jean x

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My DIL delivered the breadmilkbananas today!!!! We are in until Sunday when it may reach into the upper 20's here in Detroit!!! I'm getting a little stircrazy, but, I'm not interested in going out in the 20 below temps either!?!?!

Jack falls so much😑 He can't wait and thinks he'll manage - he never does!!!!! He's not being a jerk, he just thinks he won't fall this time- it's just a few steps. He also doesn't want to bother me😐

Asking someone to come hang out while I get out has become tricky. I worry about the incontinence issue. The family I have had in knows they are only here to call fire dept. if there is a lot of blood😄

I like getting out early in the day. It takes uss until 2:pm to get bathroomed and breakfasted. By then I'm involved in some sort of project. Then it's rush hour then dark at 5!!!!!!!! All of my going out routines have gone by the wayside, anyway😕 The 20 below wind just started howling through the window- time for a cozy goodnight - same to all.🌬❄️⛄️

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