Is this the begining?: Yesterday my FIL (who... - PSP Association

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Is this the begining?

Pooches
Pooches

Yesterday my FIL (who is still wobbly but mobile) was sat out side he had not been "feeling right" since waking. Quite suddenly he felt extremly peculiar. He called me but I was shopping and there was no signal so he called my SIL and she went to him. My MIL was there but very frightened. His ticks were out of control but his legs just wouldnt work. My SIL had to carry him into the house. As soon as I got the message I went straight over to find him looking exhaused lethargic and ticking and twitching through his face down his body to his toes. He sat and we sat for about 4 hours and slowly the episode subsided. This is the worst I have seen him. I think it frieghtened all of us. Thankfully his legs have somewhat come back but I know it has knocked him sideways. He said I keep trying to fight this but I think I'm loosing. My question is and I know everyone is different but am I likely to see more of this? Is this how the deterioration happens? Will he then go on to have an episode that just doesn't get better and apart of him just stays not responding? Sorry for all the questions its just this is a biggy for me its the forst time I've seen him knocked off his feet by this. Xxx

36 Replies
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I would get him to hospital where he can be assessed. Don't put it down to just PSP. It is very likely so, but sounds significant enough that it needs a professional checkup.

Does he have any lingering effects, of weakness on one side, or a droopy mouth, speech difficulty?

A similar thing happened to my father. He just waited until the shaking stopped, then put on his PJs and went to sleep. Following day he had reduced strength and movement down one side. When his neighbour took him to hospital, they thought he had had a stroke. Further tests showed he had a brain tumour.

So it is worthwhile finding what may have caused your FIL to have these seizure-like shakes. May well turn out to be PSP is the cause, but something certainly upset the nerve pathways.

You are doing a great job looking after him! This is a bit of a "curveball" to negotiate!

Big hug!

Jen xxx

honjen43
honjen43 in reply to honjen43

Hi jillannf6 so pleased to see you liked my comment!! I know the rest of the community will be thrilled to hear you are still reading from time to time.

Raising my glass to you, party girl!

Heaps of love and hugs!!

Jen XXXXXX

My husband never had ticking and twitching but one day, when he was at the wobbly but mobile stage, I helped him out of the car on my drive and he couldn’t move. My brother had fixed a handrail along the drive early on in the illness as we knew what was to come and he clung on to that but his strength was giving out and he was sinking to the path. Fortunately a car stopped and the driver ( a stranger and saviour) and I were able to drag him up the drive between us and get him into the wheelchair I had also purchased when he was still walking. He never walked again.

Changes can happen suddenly after a slow deterioration; my husband’s speech was slow for a long time then suddenly stopped. He suddenly became incontinent, suddenly couldn’t climb the stairs. I learnt very early to be prepared for everything and get necessary equipment and aids before he needs them. I failed though with the hoist. For many months he had been using a standing hoist to help me transfer him from his chair to commode, wheelchair, bed etc and suddenly one day, he could no longer weight bare and I ended up with him strapped to the hoist on his knees. I had to wait 7 weeks for a full hoist so he was bed bound for all that time. He cried when he was finally able to have a shower again and sit on the commode.

Be prepared.

Very best wishes

XxxX

Pooches
Pooches in reply to NannaB

Wise words xx

It might be PSP or blood pressure or something else. He may bounce back or not. There isn’t anyway to know. Wait and see is about all you can do. Take him to his GP if it hasn’t improved on its own.

Pooches
Pooches in reply to Jeff166

Thank you xx

I agree with the others that a doctor's visit is in order to rule out other possibilities. Dad never had anything like you describe with the ticks and twitches but he did go from walking (with walker) to wheelchair in just a few days time. His ability to make his legs move deteriorated that quickly.

Ron

Pooches
Pooches in reply to Dadshelper

Thank you. Xx

.ji i zag re e w wiwht the others who ha v fepoloeid to uyou already. it m

Dear dear Jill! I haven't seen you writing in a while, although I haven't been on the site much lately. So VERY glad to see you here!! I have been taking care of my mother, who is 91 and doing pretty well right now, hurray!, but can't be on her own any more. I know typing isn't easy for you, but I'd love to know a little of how you are doing these days. Love, Easterncedar/Sarah

Pooches
Pooches in reply to jillannf6

Thank you Jill for getting back to me. For taking the time to give your support. It means the world. Xx

NannaB
NannaB in reply to jillannf6

Dearest Jill, you have brightened my day seeing you have posted. So good to hear from you.

Sending you a great big hug.

🍷💐XxxX ❤️

Heady
Heady in reply to jillannf6

Oh Jill, how wonderful to see you are still able to post and join in.

Sending big hug and much love

Lots of love

Anne

doglington
doglington in reply to jillannf6

How lovely to see your response Jill.

Hope you're ok.

Love Jean xx

Oh Jill always thinking about you. 💕 Yvonne xxx

honjen43
honjen43 in reply to jillannf6

Just read ALL the responses and see you have replied twice!! Yippee! So great to see you're still tuning in!

Really big hug!!!

Jen XXXX

Nader
Nader in reply to jillannf6

Dear Jill, SO pleased to see your message and to learn that you are still reading the posts and able to write to us. Well done. I hope you have been able to enjoy our wonderful summer weather this year and been able to get outside a bit. Sometimes though it has been a bit too hot!! Lots of love to you. X

Anne (Nader)

MaddyS
MaddyS in reply to jillannf6

Hello Jill. Wonderful to hear from you. Love and hugs Maddy xx

Hidden
Hidden in reply to jillannf6

Hello Miss Jill

👋👋waving at you.

Dee in BC

Thank you everyone. We did initally call an ambulance. They were very busy so after a telphone asseseement it was deemed that he was not a priority so we would be waiting for up to four hours.

He started to regain his use of his legs. He calmed down and came back to his usual self. So as a family we decided to stand the ambulance down. I have followed uothis morning by callingour doctors to make them aware. Speaking with him this morning although hes not happy he is ok. He's backto moaning so I'm happy to say for now we will continue to go with the flow again. Thank you all so much for your responces. It really give me a idea of what I'm looking at. Xxx

easterncedar
easterncedar in reply to Pooches

Going with the flow is wise, I think. In general, it seems most downturns come suddenly, then there's a measure of recovery that doesn't quite get you back to where you were. My guy never experienced what you describe, but there were a number of simply odd and disturbing episodes - fever, semiparalysis, confusion, restlessness - that indicated a downturn in his general condition. It's hard. All of it. Best wishes, Ec

doglington
doglington in reply to Pooches

Agree with all the replies. It's how it goes. Check with Dr. and go with the flow. Love and support from Jean x xx

s been sia d af;ready - kmq t may vbe

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Hi Jillann :-). Waving to you 🙋

Anne G.

honjen43
honjen43 in reply to jillannf6

Waving to you too! 🙋‍♀️

💜💕💞💗💟 Hugs!

Jen XXX

Big hugs to you, Jill! Love, ec

Just a follow up. So last night early evening I pop back to chack in with FIL. I arrive to find him stood on the drainingboard in the kitchen trying to change the lightbulb. I kid you not. I walked in I dont think he had seen me walking up the path and he had waited until MIL had fell asleep. As I walked in and asked him what he was doing he lost his balance and almost fell into the kitchen window.

As you can imagine there were a few words. Chioce ones dont get me wrong I'm all for independence but that was just a silly risk. I believe it was down to yesterdays lost of legs that he was trying to prove to himself he can beat this.

I, on the other hand with my heart in my mouth do not need and acts of bravery( or stupidity) MIL woke and said I thought he was washing the pots.

Any way just wanted to share with you. In some respects it did make me giggle inside because that is the shear defiance he shows. But still I dont need to the heart in the mouth again for a while. Xxx

easterncedar
easterncedar in reply to Pooches

Oh, Pooches - I really feel this one!

If I could change only one of my (many) failures in taking care of my sweetheart, it would be to realize earlier how his reasoning and ability to control his impulsiveness were affected. It was frustrating for him, of course, not to be able to do the chores he wanted to do, but he also really couldn't factor in how dangerous and destructive his attempts were. I have an attic full of broken furniture and equipment, a head-shaped hole in the plaster, and repair bills in heaps to prove it. (He smashed the glass out of one stove door and pulled off the replacement as well as the refrigerator door. I could go on and on - oh it was awful.) Let's not talk about his trips to the hospital. I scolded and fussed and made him more miserable. That's what I regret. He simply never could take it on board that he couldn't safely move, and he couldn't control his impulses.

Like you, I came home one time and found him standing on a chair trying to install a smoke detector. I drew up a contract on the spot in which he promised never to stand on furniture - or the cat - and we had a laugh. I wish I had been able to laugh more. But it's hard when your heart is in your throat!

Peace, ec

doglington
doglington in reply to Pooches

Agree with Eastern Cedar. Chris never came to terms with his limitations. We would " make a deal " and he would break it immediately. Lots of damage too.

I also wish I had been able to accept that he couldn't help it.

xx

Liz_L
Liz_L in reply to doglington

Very much the same with dad. His natural stubbornness combined with the impulse control and lack of judgement have led to many visits to emerg. Mom's had more difficulty accepting that he can't help it. Staff at the residence still sometimes try telling him that he can't get out of bed without help, although with some they know that if the bed is at a regular level he's still going to try, so it becomes a regular joke with dad ("Don, you must not get out of bed alone. Will you do this?", to which dad shakes his head no, and grins, and then everyone laughs).

Has anyone started a thread about what the worst damage to property a fall has caused?

doglington
doglington in reply to Liz_L

Most of us have had toilet cisterns etc. damaged but some had horrendous falls in the garden or on roofs !!!

Hi Pooches!

I agree with honjen 43, Jeff 166, ....

In our case we have not been such sudden changes perhaps due to the systematic and daily plan of gymnastics, which seeks to stimulate the more muscles better by following the aphorism "what is not used, is lost"

In our case we have followed this idea with good results:

"If physicians agree that there is a suspicion of a Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. (Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they require more frequent rest periods.)"

Hugs and luck.

Luis

Pooches,

After reading the responses, it looks like everyone has you covered with the appropriate information. I just wanted to let you know that I found comfort in the confusing and stressful times of this disease to just reach out in this forum like you are doing. It helped me to know that I had a group that cared, understood, and shared my pain. I hope it does the same for you.

Thinking of your father in law, you, and your family,

Bobby

Pooches
Pooches in reply to Beads0122

It certainly is the best thing I could have come across everyone is absolutely wonderful. So supportive and helpful. I dont think I could cope with out you guys on my side. Xx

Good Morning Pooches

Oh my goodness Pooches . . . what memories your father in law's energetic misguided event has brought back to my mind. Mom enjoyed doing the impossible and it was hard to keep her down . . . In other words she scared the _ _ _ _ out of her loved ones. Good Luck and please give him a hug from me!

Sending Hugs - Granni B

Pooches
Pooches in reply to Motts

Will do. You have to laugh. Aftet you pull your heart out of your mouth lol xx Hug him extra tight I will. Xx

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