Last week my husband who has PSP woke up at the normal a.m. time but stayed in bed and said he was not going to need a ride to the office. He seemed distant and so I asked if he was ok and he said "no". He then said, "I'm dying today." I said, "What do you mean?" He said, "something is different today, I feel like I'm having trouble breathing, I am dying today." He didn't seem to be having trouble breathing, but I of course panicked and called his brother to come take a look so that we could decide what we were going to do. He told his brother the same thing, "I'm going to die today." I then called for an ambulance because he said he couldn't walk to the car. The ambulance transported him to a local hospital. Les hasn't been in a hospital his entire life (except at birth). He is a pretty healthy guy except for PSP (which is enough). They did a full physical and new MRI's of neck and brain and he stayed in the hospital for two nights. They found no reason for him to have a shortness of breath incident, his heart looked great and so did everything else. That morning he had a far away serious look and and he was certain that his life was ending. A pulmonary neurologist did check on him while in the hospital and told him that he didn't think he had PSP but wasn't all that familiar with the disease. That "no PSP" comment from that doctor gave him so much false hope and what upset me was that he hadn't even done his PSP homework! My husbands eyes were bright when I came into the hospital room and the first thing he said to me was "I don't have PSP"! I don't get how doctors can make comments like that when they are uncertain or don't know enough about the disease. The reason I explain my "I'm going to die" incident with all of you is to see if your loved one has made a statement like that. It was awful and I really believed that I was going to lose him that day. We ended up going to our normal movement disorder neurologist and of course they continue to confirm that it is in fact classic PSP. I asked the doctor about depression but he doesn't believe that my husband is depressed but believes that it may have been a panic type of situation. Do any of you have any advise or have any of you had a similar experience/s? Let me know.
Thanks,
NSH
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psplife
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My husband the other day told me he was ready to go. He was having a particularly hard day. He couldn't talk much, think right, or move much. Thankfully the feeling was short lived. It must have been very scary hearing those words coming from your husband. This disease is so cruel. It jerks you around day after day, never giving you our your loved one a moments peace. Then for a dr. to tell him that he doesn't have PSP not evening knowing what it is, is just not right!! I would have had a very hard time not screaming at the doc after the few days you had. My husband is on an antidepressant and it has helped him a lot. Maybe check into that further.
How weird George said the other day he was going to die soon, told him not to be so silly, he seems like he has no energy, feeling sad for him, I hate this illness xxxxx
It sucks the life right out of them. No energy! My husband was like Indiana Jones--full of energy and nothing could stop him until darn PSP got a hold of him! Some days are tougher then others.
Thank goodness for this site to help me vent and also helps me know that what is happening is part of PSP.
Has anyone ever heard of stem cell injection by StemGenex? I had a marketing rep call me today. Says for $13,000, one injection of my husbands own stem cell will make a huge difference. Anybody try this before? They are out of California. I looked them up about a year ago when we thought it was PD but she said they also help PSP.
That is what I thought and then I ran into StemGen and they are on the West Coast USA. They use patients own stem cells. She is sending me a questionnaire to see if we qualify. Do you just ever feel so desperate about PSP that you will try anything? I have my husband on vitamins and have also done nutrients via IV by a wellness doctor. They do pep him up a bit. They ran a test to see what he was nutrients his body lacked and he basically was a little low on vitamin c. Everything was pretty normal.
So sorry for your situation mate. My heart goes out to you and yours. And everyone on this site for that matter. I heard from another carer on healthunlocked that they knew a couple who tried stem cell in Ukraine then Ayurveda in India with no success. She recommended cannabis oil.
I've been looking at these guys ethnomedicine.com they've linked the neurotoxin BMAA to PD, ad and linked it to Psp through a dead woman's hair samples and I'm pretty sure it's been confirmed in ALS as well. I believe this realm of research may only be one way to create the environment in which these diseases occur, I think there are several ways for it to happen.
Heavy metals toxicity is also on my radar. I was speaking to a guy who has ms a few days ago and he hasn't shown any symptoms for 8 years after he cut meat and dairy out of his diet and only eats organic foods. He is also a competitive runner. So i'm looking into organic fruit/veg delivery co-ops. There are several in our city of Glasgow. I'm also researching ways to remove heavy metals and looking into natural food based forms of l-dopa and anti oxidants/inflammatories/Biotics.
There are trials underway using serine in ALS patients. There are trials underway using serine for all sorts actually. Here are all the current studies.
The guys at ethnomedicine did tests on monkeys by feeding some BMAA and some BMAA with equal serine, I don't think they gave any just serine. They found that the equal doses of BMAA and serine presented tangles and clumps that were less dense. Serine is used in the formation of membranes in the brain, muscles, nerves etc. BMAA has a similar structure as serine and can be incorporated into the amino acid chains, the mechanism for this involves apoptosis of the cell being switched off in the initial stage, this allows the BMAA to get a foot hold without the body's normal defences kicking it's ass. It's then incorporated into the membrane. Im not sure if it's doing the folding or if it creates weak/more sticky areas on the brains surface that allow for accumulation.
The woman who told me about cannabis managed to get a response email from the ethnomedicine guys. Here's what they said.
"Thankyou for your inquiry, you are correct that we do not have any results as of yet from the trial, so despite some promising findings just published, we cannot make any official recommendations. L-Serine is a supplement and it's not regulated either which adds to the complexity. However I do know some patients are currently using the supplement as they feel the potential benefits outweigh any possible risk. I hope we will have more information later in the year!"
She has just started her husband on 2g of serine daily. But I know they are later stage Psp compared to my dads relatively early stage Psp. I don't know if the researchers are referring to Psp patients deciding the benefits outweigh any risks. They may have been talking about ALS patients who have literally a year to live and don't give a shit about consequences While we have to worry about what effect it would have on the misfolding BMAA/Tau etc. Could it make things worse? I have no idea...
I don't know of any way of testing for BMAA, or if anyone outside ethnomedicine knows how to test for BMAA. My doctor friend said as much too. There has been mention of them using zinc to remove BMAA from the body because BMAA actually turns out to be a chelatior of zinc. However, zinc at high doses and toxic lvls causes neurotoxicity also. Sigh....
My thinking is a mix of serine and low dose zinc but I need to have a long conversation with a doctor before making this decision.
I found this interesting article in the bbc website which gives this serine research more heft.
I'm now giving my dad cannabis oil at night, that gets him a full nights sleep and allows the brain to clean itself as best it can. He doesn't get up in the night for the loo which means my mum gets a full nights sleep too. And he hasn't been as groggy in the mornings from the sleeping pills due to the cannabis using the body's natural endocrine system instead of the opioid route. he does sleep in more though but I think thats down to the disease progressing and my mum and me being busy cleaning rooms at their b+b in the mornings. So he stays in bed longer, we look at it as a good thing. I was initially worried about dose and had been giving him a low dose about the size of a grain of rice. That wasn't enough and he went back on the sleeping pills. He also struggled to get the oil out of the syringe, so I put the oil into capsules for him. I went for the fk it approach and ended up putting in around 4x the amount. We are very happy with the results and he's now off the sleeping pills he's been taking for yrs and yrs. I'm trying to find a source for cbd cannabis so we can give him cbd oil during the day, the oil he gets at night is thc oil. Cbd oil doesn't get you high but I'm yet to see if it might make him slightly dizzy. Hopefully it won't and by the time we get any he may have built up a natural tolerance due to the higher lvls he takes to sleep.
Before anyone starts talking down cannabis plz look at these links to cannabis facts that aren't distorted by big pharma propaganda.
Because its legal in some places they are now researching it properly. In the past these studies were sponsored by drug companies with immoral intent who only studied the negative effects. For example, cannabis shrinks the brain. This is true and is why it's used to assist sleep. The brain also shrinks while sleeping, it's what the brains cleaning mechanism involves. So by using cannabis you are boosting the brains ability to clean itself. This alone will hopefully slow its progress and give him more time. I hope everyone who has demonised cannabis in the past is able to open their eyes and see past the programming they received throughout their lives. True story.
You can find more info on my BMAA l-serine post. The popular one.
Peace and good luck.
*I am not a doctor, do your own research and come to your own conclusions*
There is also another form not oil that a friend in Calif gives me for Aunt Bev She felt amazing she also smokes a good 3 or 4 hits off a joint and feels much better and also helps her sleep. When I go back over the hill I will get some more and send you the name. cant remember right now
13,000 dollars?!!!.....I'm not sure I would trust some marketing rep ringing me and saying that they could help my husband's illness if I handed over whatever is the equivalent in English pounds........In fact I know for sure that I wouldn't. I am in the UK by the way.
Yes, we did in in May 2014. No success. We paid them $14,900 and in their location at Del Ray Beach, Florida. Kim was probably in her 4th-5th year of the disease by then, so maybe too far progressed. She was supposedly their first PSP patient. They've supposedly had success with regular Parkinson's patients. And the owner/CEO states she is in remission from RA, after first getting stem cell therapy in Mexico. Convinced that it worked for her, she created her own company, starting in California and later in Florida. But I'm not sure if they're still doing it in Florida. It was actually done at a dermatology office. Was an interesting trip and experience. We had high hopes it would have worked. They also injected some of her stem cells in her lower back, because she had pain from a degenerated disc. Prior to this, I had to give her pain meds daily and she got steroid injections every 2 months. I'm pleased to say that after her stem cells were injected, no more pain! So I'm a believer they can be beneficial, although because the brain is so complex, I'm not so sure about it.
I just wonder if they really have had other PSP patients other than my wife. Hmmmm.
My husband has so much pain (right hamstring area) so if he could just get some relief for that we would be so happy. I first told the StemGenex Rep that when I requested information from them we thought my husband had PD but since then it is now PSP. She was quick to respond and say that they have helped PSP patients also. We will see--I need to review the form--he may not even be a candidate.
YVONNE, AS I SAID ABOVE IF DON SAID THAT TO ME I WOULD JUST SAY OK SINCE 1 MINUTE LATER HE WOULD FORGET HE SAID IT. WHAT DOES DISTURB ME AS WELL IS THAT HE KEEPS ON LOOKING IN MY BAG FOR THE CAR KEYS AND I KNOW THAT IS THE ONE THING HE REALLY WANTS TO DO IS DRIVE THE CAR. ALSO HAVING TROUBLE DIALING THE PHONE AND REFUSES TO ANSWER IT. I FEEL LIKE SCREAMING.
Audrey I know how your hubby feels , . Bruce does not have much fight in him but giving up the car and the stove was the hardest...but he did it with out me bitchin about it......He never had much fight avb
My husband was ready for me to take him to a men's meeting on Monday morning. He was having breakfast when he fell asleep and was hanging down the side of the wheelchair. I got him into his armchair and he slept like that until the doctor came at noon. She diagnosed a small infection in his lungs and prescribed antibiotics. If there is abnormal tiredness behaviour, it is worth calling the doc. as it could end up being full blown pneumonia. He is much better now, still tired, but that seems to be the norm with PSP. Best wishes. X
PSF, MY HONEY DOES NOT REALIZE WHAT IS DOWN THE ROAD. I HAVE NOT TOLD HIM. HE STILL CAN WALK BUT IS VERY UNSTEADY AND I HAVE TO YELL AT HIM TO USE HIS WALKER. HIS MEMORY IS GETTING WORSE, KEEPS ON ASKING ME WHEN WE ARE GOING TO THE PARTY, WHEN ARE WE GOING TO OUR DAUGHTERS HOUSE TO SEE THE KIDS, DOES NOT KNOW THE DAY OF THE WEEK. I HAVE TO MONITOR HIS MEDS CONSISTENTLY BECAUSE HE HAS NO CLUE OF WHAT HE HAS TO TAKE. I THINK WHAT BOTHERS ME THE MOST IS NOT BEING ABLE TO TALK TO HIM SINCE HIS ANSWERS ARE EITHER IGNORED BY HIM OR HAVE NOTHING TO DO WITH WHAT I SAID. I AM SCARED OF WHAT THE FUTURE WILL HOLD FOR BOTH OF US. HE IS ALWAYS TIRED. THE DTR SAID A COMBO OF MEDS AND THE DISEASE. I HAVE TO PUSH HIM TO DO ANY KIND OF EXERCISE. WE ARE NOT KIDS, AND I HAVE NEVER BEEN SO TIRED AS I AM NOW. I THINK IF HE SAID HE WAS GOING TO DIE TODAY I WOULD JUST SAY OK BECAUSE IN A MINUTE HE WOULD FORGET THAT HE SAID IT. I NEED A BREAK BUT CAN'T FIND ANYONE WHO WILL STAY WITH HIM AND THEN AGAIN DON'T HAVE MANY FRIENDS, SO WHERE WOULD I GO
Auddonz, I wish you lived close, and we could bring the guys together and take turns watching them. I do not have anyone helping me ether. I have 2 baby monitors to watch him with when I need to go to the store. One is in the den and the other in the bedroom. I can see and talk to him through the monitor using my cell phone. I usually do not stay gone more than an hour or so.
If death is in our conversations. I tell him that I am going to die before him. I tell him that he is going to make me have a heart attach by scaring me when he tries to walk by himself and falls. He usually laughs at me when I say that.
mtheach, that would be nice. Its a lonely life with PSP Can he go to the store with you? Mine insists on going and I make him walk with his walker and won't let him use the electric things they have there.Won't your other half use a walker? It takes twice as long but at least I get him to walk instead of riding. Exercise is so important. Actually I tell him I am going to die before him as well and that upsets him. Doesn't want to live without me and always me close to him so that he can see me. What a rotten life
Auddonz, I do take him with me sometimes to get groceries, but he does not always want to go. We go over to the church gym and exercise/walk holding on to the wheel chair. He has almost quit using the walker because of this last bad fall. He had 6 staples in his head back in early January.
You are in the US correct mtheach? Where? I have been thinking of relocating. It would be great if they had one another and also good for us to say the least.
Auddonz, Yes, we have lived in the same town for 27 years. We live in Dothan, Alabama. It is in the southeast lower corner of the US just above Florida.
Yah if dad (B) even getsa joke about me dying first.....
Quite frankly he has not come to the emotional/psy
ychological place to say he will die....I do not think he understands/believes this thing hes got will lead to his demise....and most likely more sooner , MY demise is more imminent than his....
Should we tell them ? I tried, B is psychologically no more worse for the wear than if he did not have the conversation...So what am I saying? hmmm our mates do not have the ability to sympathize or empathize; they a re jus t here......mine is ....is yours?
abirke, I have asked him what he wants done when certain things happen to keep him alive. I asked him if he couldn't eat would he allow the thing to be used. Forgot what you call it. He said if he couldn't taste the food what was the sense of being fed that way. Today he changed his mind since I said do you want me to be alone? That he does not want and since our daughter informed me there was no way we could live with her because of our dogs. They give me great pleasure. She should know, she has 2 cats and 2 dogs. No suggestions from her at all. I am so furious. I don't know what will happen if he goes first but for all intents and purposes who knows what will happen to any of us.
It's so hard to depend on others. Just live one day at a time girl....and as for me I really don''t expect others to help me.
it reduces the anger mode. My kids do what they can but to ask them to live with them.......I'd rather hurry this arduous life to it final goal....My belief system won't let me do anything like that tho! so what to do...oh yah live one day at a time
No doubt it hurts...I wish I had words of wisdom that would help her see what she needs to be doing....all I can do is lend a technoshoulder and give you a hug...
psplife, we had about the same experience about a month ago. My husband could not breathe and wanted to go to the emergency room, so I took him. They did a xray to see if his lungs were ok, then they kept us there for about 4 hours. We went back home because they could not find anything wrong.
The neurologist told me my husband might have MSA. I researched it online (like most people would do), and found that with that disease the patients have lots of breathing problems. The hospice nurse ordered air tanks for him to use which helps a lot. He uses them all the time. How long has your husband been sick. Mine has been sick for 3-4 years. If you consider the problems he was having with ED it has been 5 years.
It is so very hard for them when they know what is going on with their body. It is good he has you there to help him.
S sometimes appears to have breathing difficulties. This is normally when he is upset about something and can't communicate. I rarely find out what's upset him, normally a toilet trip calms him down, although I know that's not the problem, it does seem to make him forget.
We were told he had PD in 2012 and just found out that it was PSP November 2015. Strange that you say MSA because I mentioned to his neuro that he moves in bed a lot at night (almost like he acts out his dreams) and she said that part or symptom is not PSP but possibly might be MSA. So I am wondering with the breathing incident happening also maybe he this could also be early MSA. Could question to bring up to neuro. Thanks for sharing your experience with me---so much learning.
My husband has never actually spoken about dying, he seems to have lost any ability to discuss anything but minor situations, but had quite severe panic attacks a few months ago, and I suspect that was on his mind. I spoke to the dr, and he prescribed a mild anti depressant which worked almost instantly, but only for a couple of weeks when the anxiety returned. Because it was such a low dose the Dr said I could easily double it, so I did & touch wood it's done the trick for quite a few months now.
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Can he go to the store with you? Mine insists on going and I make him walk with his walker and won't let him use the electric things they have there.Won't your other half use a walker? It takes twice as long but at least I get him to walk instead of riding. Exercise is so important. Actually I tell him I am going to die before him as well and that upsets him. Doesn't want to live without me and always me close to him so that he can see me. What a rotten life
Rest in peace Dad
Why professional reluctant to diagnose PSP?
I'm furious 
Confused
Psp hereditary 
