I’ve been feeling blah… apathetic, bundled with a heaping share of pain and stiffness over the last few days. I sit here in my chair with my laptop in my man cave I call the cottage in small rural town Ontario, Canada… my little corner in a great big world. My mind never seems to rest as I try to conceive ways to raise awareness and financial support for rare brain disease PSP, CBD and MSA. These diseases have no treatment or cure with a terminal prognosis and affect people around the world.
I don’t have the means, the media connections and networks to let the world know… hey–we’re here, don’t forget about us. We count too. It doesn’t mean I don’t try… I wrote a book (the only book written from a patient’s perspective) with plans for additional volumes inviting readers to join me and share my journey with PSP, advocating and giving voice to others and their loved ones on the same journey. Donated proceeds from book sales go directly back to the PSP cause–Cure PSP and the PSPA. When I can, I paint–Painting for PSP… again proceeds to PSP.
I have come up a three-part YouTube video (The PSP Triple Crown) challenge as fundraiser and awareness campaign with the hopes of it going viral. I don’t expect everyone to participate, but I do want them to know what PSP is. The Ice Bucket Challenge for ALS, which is in the same family of Parkinsonism as PSP, CBD and MSA, was hugely successful. At the very least, I hoped it would be widely shared on social media. It takes nothing to click on the Share Button. From the beginning of September 2018 to date, the video has received 819 views. Some might say this is sour grapes… nah, but the lemon and lime in the Pucker Up for PSP portion of the challenge sure were.
One of the many casualties of PSP is my personality/demeanour. Empathy has been replaced with apathy… loss of interest or, as I have referred to in my book DGAD–don’t give a damn. Admittedly, it gets the best of me some days… today might be one of them.
Tim
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Sending you a hug and a prayer. You have done much. For that I thank you!
Los Angeles, CA, USA
Hi Tim,
Once again l am wishing l had a magic wand. I would lend it to you free of charge because l know you would use it to cure psp.
Personaly, l believe one of the hardest lessons on earth is learning we cannot fix our feelings of helplessness.
I had a DGAD today... so l put on my 'Mask' and tried my best to shake it off... it did not work... so l am going to bed & pray that our tomorrows will be better.
May God Bless All You Do... sending hugs... Granni B
Couldn't go to bed leaving you feeling so down Tim. You could do with one of those ice creams you love! Wish I could sit in your man cave and make you laugh!
You would laugh at my sad attempt to do my wrist and hand exercises that's for sure! Really struggling with them. Maybe I could tidy your yard with one and a bit hands? At least you would laugh?
People on this site get behind our Tim and buy his book! PLEASE!! It really is good which might sound like an odd thing to say but it is true. All the proceeds are going to help others with PSP. I can't think of a more wonderful thing to do.
If anyone out there has media links please please help Tim to get the word spread about this and about the wonderful thing he has done writing his book.
As for you man in the man cave get working! I want to buy the next book for my birthday and it is getting close now!
Did I tell you I spoke to a man in church who happens to be a doctor? He had never heard of PSP but he has now. I didn't know he was a doctor by the way. We just got chatting and I told him about G and said that doctors have never heard of it! He admitted he had never heard about it either and was a doctor! Told him about your book too! Maybe I should have bought him a copy but he might have thought I was trying to pick him up? If I see him again I promise he will be an expert on PSP!
Now grumpy get to work on the next book or else!! ☺ Apathy is a dirty word!
The ebbs and flows of PSP. Doctors who had not herd of PSP? Go figure. Apathy is only a dirty word when one uses and expletive in front of it. BTW, I've had some ice cream and wee dram of scotch. Neither did much for me, but they sure tasted good.
Tim trying to figure out when you had the ice cream and the wee dram of scotch! In the middle of the night or early morning? I had an ice cream last night too! Not into scotch though.
Hope today is a better one for you. We all care about you so much you know? I know it must seem like words to you but they are meant. I know the apathy is a symptom of this cursed disease and I hope you can shove it away and let the sun shine again. Actually it would be good to see the sun again? Any chance of it at present seems unlikely here. It is getting very cold. Take care of yourself lovely man.
Good Morning Marie, is it to late to buy the doctor Tim's book (merely for educational purposes of course). He might enjoy a cup of tea or coffee with a new friend. Just a thought... Sending Hugs... Granni B
Granni B are you trying to match make? I would certainly buy him the book to educate him but I have no idea when if ever we will meet again. The priest thought we knew each other as we were talking so long! This was before I broke my wrist so in November! We didn't exchange contact details however. Not exactly what you do in a church?
Dad had a lot of apathy, I am still not sure whether it was a good or bad thing. Only one of his neurologists had experience with CBD, thankfully the first realized his lack of knowledge and referred dad to the second. The primary doctor had never heard of it and I explained it best I could upon Dad's first appt. After that the doctor did some reading and had a good grasp on it. I guess that was one more person learning about these diseases.
I am sure we all tell doctors at some time or other. It would be interesting to know how many then read up on it though? Some obviously do thankfully but sadly there are the others who dont? We need to get to them somehow?
Has anyone got any other ideas apart from what Tim is doing?
Oh gosh Tim, I am proud of you for what you are doing! How long have you had PSP?
My husband can not do half the things you are doing!! He can’t even work his phone! I have, of course, stop the payments and he no longer has one.....
He would not be able to do ANYTHING on the computer! He spent years and years having a team around him doing all the everyday things, never bothering to learn anything....therefore I think part of his inabilities are greatly due to never learning anything just letting a staff do it all with an emphasis on the “whore” doing a lot for him.....He continually orders me around, get me this get me that, do this do that, where is my this where is my that.....he never even tries, he never had to so he doesn’t even know how.
When we moved I found 5 pairs of identical glasses! He would misplace a pair and tell someone at the office, “go get me another pair just like the ones I can’t find” it’s insane what I have found out!....
But of course now he doesn’t know “come here from sic ‘em” so no sense in trying to teach him it does no good at all.
I'm 5+ years diagnosed with PSP and early onset dementia. He's sure he doesn't want to get set up in an apartment somewhere. I think it's only fitting that the "whore" split the caregiving between the two of you... at the very least extend her the option. He has no idea what's in store for him, no doubt, she doesn't either. Run the apartment idea past him, tell him it will similar to hospice, she could look after him there while your having respite.
I did ask if he wanted an appartment by her he said no.....he is constantly saying he loves me and doesn’t want her.......this started just recently, I am sure he is aware she would not want to care for him. I have not talked to her, nor do I intend to, because I will attack her!
It is possible if he were still healthy he would still be seeing her, I have no way of knowing....
He has asked to rededicate his life at church....I met with our pastor and told him all, he then wanted to talk to my husband. We are new in this little tiny town and the only interaction the pastor has had with him is shaking hands when we leave with no conversation. I am sure he was shocked Friday when we met with him because the communication is so hard for him.
He visited with Bob quite a long time and felt he would like him to do it next Sunday, not this, but that membership was not possible at this time which does not mean we can not participate there. He told me privately he did think Bob was repentant and unfortunately with his condition he will not, baring a miracle, ever be alble to be involved there.....
Read your message and was touched by it! My wife's PSP reduced its march of progression, or so I feel, because of some weird things I did!
1. 90% of human diseases is due to inflammation. Including PSP, or so I believe!
2. The MRI of the brain showed a mass of blood stuck up at the top, which the neurologist said was plaque. No healthy circulation of blood.
3. So I embarked on a typically Indian form of treatment, together with some Allopathic drugs.
4. I took 4 parts of turmeric powder which I powdered from dried turmeric roots, 1 part black pepper corns, 1 stick cinnamon, 1 part Fenugreek, 1 part dried ginger powder and finely powdered all in my blender cum grinder. Took 1 tablespoon of the powder and mixed it with 1 tablespoon pressed coconut oil and 1 spoon of honey. Gave this mix thrice daily after meals.
5. Everyday before her bath, she underwent physiotherapy of hands and legs, ending with hip- and hands- cycling, - forward and reverse, 20 times each. At the end of this, I worked on her head and sides of her head a gentle massage to stimulate blood circulation.
6. The coconut oil helped in taking the powder mix across the blood- be barrier, as well as supply much needed cholesterol feed for the brain.
7. Inflammation was brought under control through the turmeric mix.
8. Twice a week she underwent reflexology therapy for digestive and brain blood circulation issues.
9. Happy to inform you that the plaque greatly reduced. She has become more aware of things around her and interacting more.
10. Don't know if the progression of her PSP has been braked or not, but in my eyes and understanding, she has definitely improved!
Sounds like you have really thrown yourself into researching ways to help your wife. Your loving efforts are commendable. Sending hugs to you both... Granni B
That's for sure. I have recently started taking Tumeric for my neuropathy & l drink ginger tea. But l like the sound of the mixture you are making. I am also thinking about acupuncture.
Tim my husband was pre diagnosed with Parkinson's disease in 2005 but 2017 they said it wasn't Parkinson's it's psp I am so unsure about this diagnosis and you seam to be well educated on the subject. He still socialised we go on holidays but his speech and balance are quite badly affected. Now if you believe what is printed then he shouldn't really be here now after 15 years. Whenever I question his diagnosis at the hospital they all keep telling me it's his outlook on life and stubbornness that keeps him going . He won't let anything beat him .my question to you is have you heard of anyone else similar ?
My MDS has patients past the 10 year mark. Everyone is different, some progress very quickly and others like myself have a slower form of disease progression. There are ebbs and flows and even plateaus with PSP. Although there are shared symptoms, the disease will manifest itself differently with each patient. I know there'll come a time when PSP will throw all it has at me, but until such time I will continue raising awareness and support towards a treatment-cure.
Tim
Tim maybe the moon & the Aliens are messing with us... Sunday is the Blood Moon so be careful. I admittedly have been Cantankerous lately... But "lt's All Good"
I’m so proud of you and to know you. What you impart helps me know what Charles was going through. He did communicate some things but your openness is comforting.
Please know you are doing something grand. You may not think so but believe me, and everyone here, it is appreciated. Bless you!
It took many years for ALS to be widely known. It helped that it was linked to someone famous like Lou Gehrig because everyone had heard of him. People are far too impressed by famous people, but that's the way it seems to be. When I try to explain to people that my husband has PSP, I get a blank stare. If I say he has the same illness that Dudley Moore had, they at least show a little more interest. I don't know if Dudley Moore was well known enough to help with awareness or not. And, of course, he's no longer with us. I know both Muhammad Ali and Michael J Fox have also helped raise awareness for Parkinson's. I wish it weren't so, but I think it will be awhile before PSP is very widely known. I think you are doing more than most of us to raise awareness and you should be proud of that. I hope your DGAD is better by now. You've done a lot that you can feel good about so hang in there. There will be better days.
We now have Linda Ronstadt whose PD dx has been changed to PSP. The younger generations may not know her and her once beautiful voice, but I'm sure most of us boomers do.
Hi Tim, Sorry I was travelling and didn’t get this post at the time.
I can sure understand the apathy: the disease just takes so damn much out of you! I think you do a tremendous job of awareness raising given the uphill battle of its relative rarity and no (current) celebrities suffering it...
Hang in there - You’re a star in our world at least ❤️👍🌟🌟🌟. Anne G.
My general practitioner doctor didn't know what PSP was either until I told him about my Dad's condition. I read somewhere too, that Linda Rondstadt had psp. Stay strong Tim. And be proud to know you'll helping people now and for many years to come. Thank you for that! You're in my prayers.
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