I've been idly thinking about this one a lot, it's something that I had noticed as Davids condition progressed, and since he has gone I've had a little more time to analyse.
Every time that David had a hard fall, the PSP seemed almost instantly to move on to the next level. It was almost as if the impact knocked it along as in between falls, David always seemed pretty stable with no deterioration.
I know there is no science behind this and it could be the that the deterioration happened and showed itself in a fall when he suddenly couldn't do something that we had always assumed was ok.
But the biggest thing for me was as I've just mentioned in another post, we were involved in an accident in a patient ambulance on our way to an appointment, and immediately that evening David was more tired than usual, and from then on for his final five weeks was tired like that every day. That's a very strange coincidence!
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We got rear ended by another car in June of 2013. By August Larry’s decline was noticeable to his relatives. At first we all thought his two previous falls hitting his head plus the accident had caused multiple concussions which were the reason for his symptoms. After a year and a half of assorted tests and a new neurologist we got an answer in May of 2015.
Most definitely! Any sort of trauma seemed to knock Steve and he never got back to how he was. Falls especially. Sometimes the more dramatic the fall, the bigger the decline, even if he hadn't hurt himself and Small falls, that did serious damage, hardly effected him. So I don't think it was the actual injuries that took him down. Thinking on my feet here 💡💡💡perhaps the falling has more significance, than anybody is aware of. Perhaps there is some sort of brain event that causes the falling. All I do know, the longer I could keep him from floor cuddling, the longer he was stable. Didnt stop the march of PSP though!
Yvonne my husband has these, I'm going demented with them. He's constantly scratching head until it's covered in sores, calling nonstop I can't even use bathroom in peace, pulling at things , throwing things, last 3 days have almost sent me over the edge. Day and night. I've got respite 4 Dec, I'm hoping I'll make it till then !!! Hugs xxxGW
Oh it drives you mad, today he was so agitated, would not take medication, had to call doctors, DN came in and gave him an injection, so hard to cope with, feel like screaming. Sending you a big hug. Sorry for the late reply been hectic here for the last 4-5 days. Yvonne xxxx
Because we were aware that falling was a symptom he always had someone walk beside him, even when he transferred to a walker. The fall was him running to the door to answer the doorbell. It wasn't a bad fall and he got himself up. This all happened before he had a hired caretaker, and when he was still under Parkinson's diagnosis.
We hired someone to come in during the day, M-F, in late November, early DEC 2016, after his first bout of pneumonia. He was treated with antibiotics at home.
I think the real enemy wasn't him falling, but the stress, anxiety, FEAR, that he carried......that increased after each new symptom. AND of course each time there was a new symptom that he had to confront (choking, balance challenges, fatigue, etc) there was more stress for him.
But what really pushed things for my son was the two bouts of pneumonia. The first not as much a setback as the second that put him in the hospital for 7 days....him coming home with a PEG.
That is what I can conclude...that it's more the stress on the system than than the response to a fall etc. When Bruce caught pneumonia it was marking his final days. The stress of that illness could not be recovered. That is one thing the Dr said that was a fact...."He will die of pneumonia, not of actual PSP" I suppose it was the combination...If he hadn't had PsP he would have recovered the other p, (pneumonia) ....of course if he hadn't had PSP, he wouldn't have gotten the other p...
Hi AVB, I am 77 and so not too much chance, but my greatest hope is that before I die there will be more research pointing to more probably causes of PSP. I have shared a number of times my money is on genetics and mutant cell. My MD (who was also Jeff's) puts his money on a virus that was latent for decades.
I goofed, but forgiven myself, for not having donated Jeff's (my son) brain to PSP research. Now, I am comfortable with my time. When I was sharing my son's care, I had little time and was soooo tired and soooo anxious. I lost weight (good thing). Now I have gained back more than I have lost and my son has only been gone 5 months.
I'm still working on forgiving myself for "I don't know what"......that somehow I could have done more. I am feeling better and have confidence that with time and prayer I will get there.
ES the "what ifs" make one discouraged and exhausted. You did everything you could so go ahead and give yourself a some encouragement and rest. and dont eat your pain and sorrow, that only leads to more discouragement...get out and take a walk
give yourself time to heal. If I remember right, it wasn't long after diagnosis that your son passed away...Maybe grief therapy would be good. don't be afraid to ask.
ES, You have the right to feel happiness...You'll get through this...remember that we are hear for you.....And so is He who knows every hair on your head, every need before you do....unfortunately in this world we must travel this rocky, torturous road called life.
((HUGS))
Love,
Andrea
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Psalm 23:4
Hi AVB, thank you for your response to my sharing. I did grief therapy, perhaps not enough. I did learn that we all grieve in different ways, it's a process, and there is no universal timetable or way. It is what it is.
Since 1974 I do a daily 4 mile walk M-F. Each morning I wake up at 5AM and leave the house at 6AM. Not on Sat or Sun. Even thro my son's illness I did not give up my walk. I have found thro the years it helps me emotionally, mentally, and physically. I thank you for the suggestion. I think it was wise. I just wanted you to know a bit more about me.
I apologize If I have led you to believe that I wallowing at home. The fact is that I do have some laments. My laments I do not equate with "what ifs". I realize donating my son's brain is no longer possible, but it is a lament and possibly that lament might motivate others on this site, to research the possibility (if so inclined) of donating their loved one's brain. I understand that when my son was ill I had little time to research how to do that, and then suddenly that door was no longer open.
I do hope, as I am sure do many on this site, that the cause of PSP is discovered before we are no longer on earth.
I understand. I think that is a wise way to help others take the action to donate. I am glad you walk I wonder how many miles (Km) that would be since '74. I began a 1 mile walk and found an even better 2 mile walk . The hills on either side are at their lowest around me, thus I have a larger view of the sky....almost horizon to horizon. Last night while walking the dog a cloud was hiding behind one of the low hills. as the sun sneaked behind, the edges of the cloud were BRIGHTLY illuminated. it looked as if a door was slightly ajar and the light within was spilling out. As the sun lowered itself it somehow lightened the face of the cloud just enough to see it's contour within; a 3 dimensional look....as I stared at it, I imagined this was a portal to heaven with the door open, welcoming me....It was so beautiful and intense..words lose it's full beauty (Unless Georgepa was writing)...I usually take my phone but did not this time thus I couldn't share it with the kids....I guess it was my own....to keep and be reassured
In many cases, it appears that PSP ends up being the secondary cause of death, even though it probably lead to the main cause. I'm not sure whether this hinders the research.
I don't know if anyone dies of PSP. It seems complications like pneumonia , chocking, liver and kidney, heart failure and not eating and taking liquids . Our Neuro also said PSP Would not be the cause of death..
However after a bad fall there is a definate decline.
How are you abrike. Hope you are carding for yourself. Much love Althea
Jeff166, don't cut yourself short. When my son got his first bout of pneumonia he bounced back pretty good. He and I had a great 2016 Xmas together. We went to evening church services, we had a great meal here at my house, we opened gifts, we played scrabble. Do not give up hope on overcoming the pneumonia or even the 2nd bout.
I truly believe that the PEG did not live up to the hope that Jeff had or that the doctor gave. But as my daughter, his sister, says, it gave my son hope. So, she was glad he got it.
Because of his recovery I was taken aback when he got the second bout and his MD said he had to go into the hospital. I have shared, that when he came out of the hospital was when I discovered in his paperwork that he had sepsis, in addition, to the pneumonia. He was in the hospital for 7 days and was NOT fed. He came home with a PEG.
Others have shared on this site that their loved one's had many more than 2 bouts of pneumonia. I continue to read the postings because it helps to accept how quickly he went from first visible symptoms (March 2014) to his death, May 4, 2017. I'm grateful that his suffering, though GREAT, was not as bad as others described on this site had. I'm sure if he had not died, and the PSP continued to progress I would have greater sorrows than I have.
In a patient ambulance... seriously?.....you would think they would be the ones who didn't get bumped and rammed....I think shock to the system can exacerbate anyone's poor condition. I know when I get stressed...really stressed... like after a special ed meeting or a near hit in my car something that is more acute than chronic, I have a seizure! Even flashing lights and roller coasters can bring one on....(did you know roller coasters have warning signs that rides could bring on szrs!....and they do!)
Oh yah, now back to your thought...
....well I guess it does merge with my thought in that Bruce fell 2 or 3 times a day; some were through windows or toilets; many were through funiture and cabinets. However I did not see each sudden impacts enhancing the condition....In fact his falls lessened as we became more aware of his needs but of course his conditioned still worsened.
So that's my take on it I would like to read what others have to say about it....
Is it cause or effect? I noticed that symptoms deteriorated after a sleeping phase, a 'spaced out' episode, or a busy day. Am sure stress can have some impact too.
I think maybe the fall or other event is likely to be an indicator that something has changed in the brain - though acknowledge that an event such as car rear-ending etc that shakes the head could also exacerbate things
One day we may find out! Meantime, we live with what we see and come to decisions to better deal with what has been called "the new normal"!
Some interesting responses, and anecdotes. I am sure there is a correlation, but which way round it is I really don't know. Maybe all PSP diagnoses should come with a roll of bubble wrap ?
My husbands symptoms began after he had knee replacement surgery. At first he Recovered and walked well, a few months later he started falling and looking a little dazed. Family and friends still ask what happened to Dan after his surgery.
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end of PSP
The Little PSP cards
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