The PSP Chronicles

[daddyt]

Tim Brown

November 7 at 4:27pm ·

WordPress

·

The next installment of The PSP Chronicles... this is where the real story begins.

The Beginning continued…

Hold up! I need to go back, before I can go forward. Let’s rewind three years to the early spring of 2012 to where my journey first began. It’s very early in June 2012, and I’m r…

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A question for those afflicted with PSP and or their family/caregivers: Have your loved ones experienced what I call... brain zaps. The experience feels like a low voltage shock... but it's not painful. It starts in my head and continues about half way down my torso. It's not dizziness but can sometimes precede a fall. Mistakenly, I posted this message to another site on Health Unlocked yesterday... my apologies, I had a real brain hiccup yesterday. DaddytT

[abirke]

Have you spoken to your neurologist about this? Are you in a study ? I cannot remember

[daddyt in reply to abirke]

I have. She hasn't really been faced with the problem before, but suspects that it's PSP related.

[abirke]

I will ask my husband. When do you get these, upon arising from sleep, upon arising from a seated position, upon entering another room?, when sitting down , when trying to focus? Have you eaten much prior to sensation? have you had you meds, coffee, sugary treats etc?Do you have them during the day or at night. Do they cause numbness or lack of ability to use extremeties fully? Besides falling and that is a big one, what other consequences are there?

Please forgive my questions just want to know.

AVB

[daddyt in reply to abirke]

No specific times... just very random.

[abirke]

When I was younger, my epileptic auras would bring on a strange sensation just before the actual seizure.....our nuerologies are difft but could it be an aura?

[daddyt in reply to abirke]

Maybe. My dear friend Mike who is also afflicted with PSP and FTD has experienced these same sensations. I know he asked his neurologist too, but she was at a loss to explain them and chalked it up to PSP.

[Marie_14 in reply to daddyt]

Daddyt

My husband has had this happen for years! He wouldn't go to the doctor and like you they were just random. I don't know if he still has them as he is really struggling to talk now. We didn't know he had PSP then and I have never connected the two until now! It could well be one of the first signs? He used to get bad headaches too but again didn't want to bother the doctor! The problem is although over the years he has had MRI's after I have nagged him they don't show anything do they? So his came back normal.

Marie_14 x

[daddyt in reply to Marie_14]

MRI's are not that conclusive. There is another type of brain imaging... can't remember the name at the moment. You may have references to the humming bird. The area of the brain near the top of the brain stem should look like a duck. In PSP patients they have found that area looks more a humming bird... I have named my humming bird Harley lol.

I still have the "zaps" from time to time and fortunately I'm still able to talk, but my voice has definitely softened over the year and a bit.

[Marie_14]

Daddyt. I think your question is really important. For years my husband has had these zaps as you call them. He actually described it as though he had had an explosion in his head. Then he got headaches but they were not as frequent. My husband was only told last Christmas that he "probably" had PSA but he also has signs of MSA apparently. We go to see the Neurologist in December which is the first time since January!! So my husband was "diagnosed" based on the many falls he had. Plus whatever the Neurologist observed. However we said he had not had any symptoms before his walking started to go. Or so I thought until I read your email. Maybe some people get these explosions at the beginning and others get them later on? Have we discovered something here?

Marie x

[daddyt in reply to Marie_14]

For all that medicine knows about PSP... it still knows little. Symptoms present differently... each one of us afflicted with this disease will not experience it the same as others, but can have shared experiences. Similar symptoms may occur earlier on or even later on, some of us progress very quickly after diagnosis and some are much slower. Have you or your husband read my journal/blog? It details my personal journey with PSP over the last three years until present. Some of those who read it have commented on the symptoms, the personality changes, physical limitations... the whole PSP package. On a side note, I have not experienced the headaches you have described that your husband gets. I do however, get extreme pressure in my head... it's not painful but it's very uncomfortable.

[Marie_14]

He doesn't get the headaches now oddly enough. He doesn't know anything about PSP because he can't face it. I have had to read up on it and keep it to myself. He also has Leukaemia and it was the same with that! He knows he is dying but he doesn't know what might happen.

I read your PSP Chronicles last week for the first time. Found it by accident. You told me to go back to last November and read that but I can't find it! Have tried believe me!

Marie x

[daddyt]

It's be one year to the day that I began to keep a journal detailing my journey with PSP. Thanks go to Marci... my late PSW and my dear friend Mike Sweeney who also suffers with PSP and FTD for the push and inspiration. It was always my intention to post my journal for family and friends as a blog format, which took me some three months later in February, to get motivated and figure out how to do it. This is the story of my journey and how it began and continues to this day. I know that some may have already read it from the beginning and others have not. I have myself read them over again and rediscovered (besides type o's lol.) things that I have already forgotten. So if you're inclined to read on, allow yourself some time. The posts are not as lengthy after I caught up my handwritten notes... I think (: Tim Brown published an article on WordPress. February 4 · WordPress · The Beginning Nov 03/15 I've given it some thought in the past, but this is the first time in nearly two years after my diagnosis of Progressive Supranuclear Pa... See More The PSP Chronicles The Beginning Nov 03/15 I’ve given it some thought in the past, but this is the first time in nearly two years after my diagnosis of Progressive Supranuclear Palsy – PSP, that I’v… WORDPRESS ... here the link again. Very sorry to hear about the leukemia.

[daddyt]

wordpressco900.wordpress.co... this link should work for you. Sorry internet and my brain haven't been working all that well tonight.

[Marie_14]

Daddyt. Thank you for the link. Have just read last November now! It is shocking how young you and your friend Mike are. My husband is 72 and that's young these days. He has been ill since he was 69 with Leukaemia. However it is only since December last year that we knew why he was walking strangely and falling. Now thinking about your zaps I wonder was that the start of it? He couldn't walk very fast even before all of this...another sign? All terribly sad. I truly hope that they soon find a drug to at least control this awful thing.

Hugs to you.

Marie

[daddyt in reply to Marie_14]

I have to believe that researchers are on the cusp of potential treatments. A breakthrough in any neurodegenerative disease will be a back door into all of them... that's my hope and science agrees. I think the same cam be said for all cancers.

Daddyt x

[Marie_14 in reply to daddyt]

You are right. They are making great strides with cancer. Please God all the other nasties are on the list and they are beginning to understand what is happening? I truly pray that is the case. Too late for my husband and many more but if they could even stop it in it's tracks and control it that would be huge. Good luck to you and your friend. Thank you so much for your PSP Chronicles you are doing something really positive and helpful.

Marie x