I have noticed that most of the replies I have had to various posts have come from people who are caring for someone, or who have already lost them to the disease, rather than those who suffer from the disease itself' .It strikes me as strange, or it did until I realised that most of the people who were most affected by this thing are the carers.
John
Carers tend to post about issues their family members or friends are going through, looking for advice or simply to rant. Those patients may have progressed to a stage where their dexterity limits what devices they can use.
There are several members who have been Dx with PSP or CBD and post occasionally. As Mottsie stated searching through old posts will yield some good patient perspectives.
Ron
The people with PSP have a hard time typing and even seeing the screen. The fact you are doing your own posts tells me you are in very good shape. There are some people with PSP and CBD doing their own post on here.
I agree 100%. My son, among his very FIRST symptoms was double vision. He use to love to entertain himself on the computer but within 2 years he had to give it up.
I am always amazed and gratified to hear from DaddyT and Bargiepat.
Los Angeles, CA, USA
I think that you are correct. I am awaiting their response.
John
On this site, pandyjohn, it is better for U (each of us that the posting affects) to do the reaching out. Sight is impaired with PSP which makes reading the posts difficult. Also, not everyone checks each day the posts. Write Bargiepat in the SEARCH HEALTHUNLOCKED. He shares incredible photos.
Daddyt wrote a book and he tells me (in my impatience) another will be out soon. He always has a "positive outlook" even among challenging circumstances. I always look forward to his posts. Both Bargiepat and daddyt presently suffer from PSP and or CBD.
I send blessings and prayers to you.
BTW, Parkinson's, PD, except for some shared symptoms, has no relation (as of current research) to PSP, BUT ON THE PD SITE THERE IS MUCH EXCITEMENT ON VIT B1hcl. I share this because I have no neurological brain diseases that I know of...yet I am 78 years old and had some balance situations.....I started the B1hcl about Sept 1st. I started off slowly and now take 300mg at breakfast and at lunch. I notice very NOTICEABLE changes in my balance. If my son, Jeff, were alive I KNOW I would have tried it on him.
Margarita, Los Angeles, CA, USA
Can you explain what B1hcl is? Is it readily available.
Thanks
Vitamin B 1 (thiamine)...the hcl is the form. It is a member of the Vit B family and works on the nervous system.
Yes, in the United States (and I assume elsewhere) it is readily available. You can order it thro Amazon.com.
I would encourage you to get on the PARKINSON'S site of HealthUnlocked. Put in the search bar, Vit B 1, hcl......I am sure numerous posting will come up. Best for you to read those who have had success and suffer from a neurological condition.
Good luck!
Agree. As a carer, PSP & CBD have left a lasting impression on my life, as well as knowledge and experience to impart on this. Being able to do this here has also helped me recover from my grief at losing my husband to CBD.
Like other carers on this site, I have insight like few outside of here, and am able to give new carers answers to the same questions I came looking for answers to. Initially I did not know there was a search option, just needed the immediate rapport I received from others going through the same nightmare.
Yes there are some here who have CBD or PSP. They are few, maybe because they don't/can't enquire, or don't want to know; then there are others who have "lost their voice" along with other ravages of the disease.
Moffat is one who still posts, along with daddyt and bargiepat, all great thinkers, philosophers and fighters. Liz and jillanne are two who have lost their voice but are still in contact. You may find their historic posts of interest.
Hugs
Jen xxx
I wait to hear from them.
John
Hi Pandyjohn, I have cbd and occasionally reply to posts. Like you it does seem a good few posts are from the carers but if they can’t let off steam here they will go mad! It also helps to try and see things from their point of view even though this disease renders us impotent to change its progress.
Jayne
By the time we knew that my husband had PSP, he had neither the dexterity nor vision clarity to operate a computer. The fact that you are able to ask the question tells me that you are still in a very early stage of the disease.
Dear John, I think that carers look for support on this forum for many reasons. My husband wasn't like you and didn't really want to know the development of his disease and also wasn't able to use the keyboard to communicate. Carers on the other hand need to know so that they can help as best they can to support their loved one and deal with all of the outside agencies that are part and parcel of this disease. There have been several sufferers contributing on this forum which are very valuable contributions and help carers to see things from their perspective and visa versa I'm sure. I often read posts to Ben that I thought he would benefit from, others he didn't want to know about, maybe the apathy? I think it's great that you are sharing your thoughts with us all. Thanks
Lovely evening Kate xx
I didn't know anything about what carers wanted from this site until I posted this, Thanks for your reply.
John
I can only echo what Kate says. I now hope I can help those who have survived the journey.
My husband benefited from what I learned here. He certainly liked hearing my edited version of what I read. He also felt he made a
" second hand " relationship with others here.
Jean x
Will wait for them to contact me .
John
Hi John,
They won't be able to contact you as Liz is now severely disabled and Kevin is taking a break from the site, to deal with matters. But Granni B's suggestion to look at past posts is a good one. I will send you a private message with a suggestion.
Hugs XX
Anne G.
John, I'm one of the sufferers - 5+ years now into PSP. Many forget that there is more than one "victim". PSP is a family affair.
Tim
Hi John my husband has psp he struggles to use an I pad or internet that is the reason I am always the one on the site rather than him I think you will find that is the case with a lot of sufferer 🤗
Hiya. This might be because the 'sufferer' can no longer use a computer. My darling husband would have found this site of great interest but he cannot even use the TV remote control any longer. I hope that your mail will reach others who can still respond.
All the best AliBee xx
Whilst I empathise wholly with my husband and this dreadful condition he has, on the whole, he is content to lie on the settee, watch the odd television and sleep, sleep, sleep. He finds communication and conversation extremely difficult and reading is a rarity now (for this ex-academic) as his eyes water and close much of the time. I, on the other hand (like so many other carers), have already 'lost' my soul mate, friend, walking companion, joker, kitchen helper, DIY fiend, gardener, driver ... to this awful, cruel and debilitating disease. Unless I am able to go out, most days my only communication is with myself as B cannot take part in the most simple conversation - at best, there is the odd Yes or No even when pressed. My husband could not see the computer screen well enough or for long enough to write about how he feels about having PSP, even if he could articulate it through speech or even in his head. So, I ask, is it any wonder that carers are the ones who communicate through websites such as this? We have to 'speak' to someone about how we are feeling and the problems we experience with the ones we love but who are now distant and in their own worlds of ... what? - pain, anxiety, passion, excitement, frustration, irritation, defeat? Without communication we lose something of ourselves and this has certainly happened to B - he is a shadow of the former intelligent and exuberant man and I feel I can do little except generally care for him and watch the deterioration, experiencing every emotion known to mankind whilst I do so.
Sorry, this wasn't intended to make everyone feel depressed. It is a fact and we will still go on to try to enjoy Christmas with our family and hope to spark some emotion and interest in B with all the stimulation that will be around us.
Festive good wishes to all readers!
I think that I understand but I hope that you are able to have a happy Christmas'
John
My husband has died now but I felt exactly as you describe. Its a very testing disease for carers as well. This site was a lifebelt for me as so often I felt alone - although I have a supportive family and good friends. I got exhausted explaining PSP elsewhere - even to dr.s
I hope you have a peaceful Christmas. Feel free to rant on here if it isn't. You will not be alone.
Big hug from Jean xx
Hi! I totally understand how you feel. The same here. I pray every night and morning ,that there will be a miracle and my best friend, my everything will come back to me. I thought we would enjoy our later years in life. It is totally opposite. All I have are memories from the past. Just the simplest things even, like a touch of his hand on mine, the reassurance he has your back , to the end. Now you are it. You are in charge of totally everything. No Sunday drives thru the mountains, because now you are the only driver, it’s like that’s not even important anymore. You focus and try to go before the one you love to keep him safe from any falls or hazards that could make things even more difficult. Sometimes I can’t even believe I’m going thru this…. But it’s not about me, but yet it is, because I’m worn out from the stress of handling everything and making life as easy as I can for the man I have been married to for 47 years. And love with all my heart, yet I don’t really know this man now. It’s the saddest thing ever. He is still somewhat mobile. So I know the worst is yet to come. He is at the stage of getting really choked even on liquids, so I know unless a miracle occurs , what comes next, and it is killing me! I just want HIM back. 😢
I just saw this John & wanted to respond. I too am a Psp sufferer, diagnosed May 2017. This site helps me to understand what my husband is feeling as he watches my progression. I will quote from it when I think the problem’s solution will help us & he’s always open to the suggestion. My ability and interest in using my iPad has not changed since diagnosis and I use it often.
If you have told us where you’re located, I’ve forgotten- a reminder would be helpful.
I have unfortunately never communicated with another Psp patient and would be open to your writing me directly.
Take care, Kathy
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