Wish we can help: Hello to everyone in this... - PSP Association

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Wish we can help

john_z profile image
15 Replies

Hello to everyone in this supportive and kind community.It’s a very tough time for me and my family as we lost our father a month ago.My dad was very generous, always willing to help other people.We want to give some things that he used and we would be pleased if they help even a little other patients.I ‘ll address them to the first 3 people (no postage needed) that ‘ll send a reply.My dad was taking Quinomit, it’s Q10 in liquid form, and we believe that it was giving him some help.According to our neurologist, it’s the only effective form, Q10 in pills don’t help.For anyone that want to give it a go, we have 5 bottles left.Also, we have a pair of prism glasses.It didn’t help my dad, but perhaps another patient could get some help from these glasses, as the disease is different for each one.In addition, we had bought an e-reader, a device that can be loaded with e-books and pdf files.It can be useful for a patient who is mainly in early stages i believe, as you can enlarge the text, making reading more easy.If you are interested for something of the above, send me a reply.Thank you so much for all your help all this time.I wish you and your families all the best, John.

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john_z profile image
john_z
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15 Replies
shasha profile image
shasha

dear john .

first of all let me say how sorry i am that you dad has gone - to a better place .... and secondly i would be most grateful for the Q 10 -0 i have been reading about it for some time and would like to try it but i live in france - i would be very happy to pay the postage as it may be a lot from where you are -

if i am lucky enough to be the the one you choose i wikll in box you my address

love to you sharon

john_z profile image
john_z in reply toshasha

Hi Shasha, thank you very much for your kind words.Please send me a message with your address in my inbox and i 'll send you the Q10.

ultramodern profile image
ultramodern

Dear John...thanks for your generous offer. Don' need any items as I was my wife's carer.I just managed todonate two electric wheelchairs plus a transfer chair that hung around almost a year!

Thanks too for the nice words about this forum.

Just to wish you and the family courage....and I think I'm expressing this forums collective thoughts when I write that it's a blessing your dear Dad's pain and suffering has gone

.And he'll be watching over over you, I'm sure.

best,brian

john_z profile image
john_z in reply toultramodern

Hi Brian, thank you so much for the nice words, too.I learned a lot of information in this forum, i am grateful to many wonderful people here.I really admire people like you, it's so brave to keep helping other patients after the loss of your beloved one.Thanks again, i wish the best to you and your family.

deew profile image
deew

John

Thank You for coming back,the gift that would benefit myself would be your Dad's experience ,if your able to share.So sorry for your loss.

Take care John

Deidre in BC

jillannf6 profile image
jillannf6

Him john

I am reallly sorrry your dad has gone

It dioes not seem long since u 1st posted and now he

Has gone

He will always b in ur thoughts and thsnks4,'thinking,of us still on the site

Loll,Jilll

john_z profile image
john_z in reply tojillannf6

Hi Jill, thank you very much, your strength and courage are a real inspiration for all the patients and the carers.I wish something effective come up soon for this horrible disease.Keep strong, John.

peterjones profile image
peterjones

dear john very grateful fir the offer but do not need at this time i just wanted to say im very very sorry about the loss of your father mate to you and all the rest of your family i just wanted to say keep your chin up keep smiling im sure your dad is take care peter jones queensland australia psp sufferer

john_z profile image
john_z in reply topeterjones

Hi Peter, thank you very much for your kind wishes, like Jill and Shasha, you are one of my heroes in this community for the way you are dealing with the disease.I wish you all the best, keep the faith, John.

Weedy2 profile image
Weedy2

Hi John

Sorry I am a bit late in responding to your kind offer. I also suffer from PSP and take Q10 but in tablet form (400 mg three times a day). I am interested in your late father's liquid form; can you give me some details.

Regards,

Weedy

john_z profile image
john_z in reply toWeedy2

Hi Weedy, my dad used to take a small dose of Q10 in pill form.A neurologist told us that Q10 in pill form has no effect, it only goes to stomach and then dissolved, we want Q10 to cross the blood and the way to achieve that is to give Q10 in liquid form.So, about fifteen months ago, we started Q10 in a liquid form called Sanomit.Then we changed it, as last summer come up in market a new type of liquid Q10, the Quinomit.It's the same product but more concentrated, so you need the half quantity per day.It's expensive, but i think it's worth a try.I believe that liquid Q10 was helping him, especially in strength and energy.During these months my dad's condition didn't worse notably, we had notice deterioration in his eyes mainly.He left us suddenly from a kind of cardiac arrest.If you want more information about Q10, you are very welcome.

Weedy2 profile image
Weedy2 in reply tojohn_z

Hi John

Thanks very much; I shall try to get hold of QUINOMIT.

LyndaEllis profile image
LyndaEllis

Hi Brian,

I am sure that you miss your father.

I am interested in the Coq10 but I liive in Canada so therefore I' ll pay the postage. Send it C. O . D.please.My address is:

887,Rossland , B. C.,Canada

Brian,

john_z profile image
john_z in reply toLyndaEllis

Hi Lynda, i am really sorry i can't help you, i have already given the Q10.My best wishes to you and your family, John.

Baruli profile image
Baruli in reply tojohn_z

So sorry for your loss John. My Dad is in the same situation. Thoughts and prayers are with you and your family as you come to terms with this great vacuum in your life..

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