Notes...

[AliciaB]

I stopped looking for CBD changes; I do try to take note of things that come up. I keep notes, not a journal. I print them and give them to the doctors when we go for an appointment.

I'm getting use to the many changes over the past year and a half... He never wants to go out to dinner, visit friends, go for walks, bike rides, concerts, etc. He shows no interest in doing anything with or without me. He has no interest in doing anything in the house or the yard anymore (But he tells me how he always did the yard). When he does dishes or laundry it's never done the same way or put away in the same place. Everytime I cook it's a scavenger hunt to find what I need. But he usually leaves the cabinets and drawers open, so I guess that makes it easier for me to find things. I try to find humor...

Some of the notes over the past month:

-A few weeks ago I told him I would pick up his medicine tomorrow, I didn’t have time today. He had an inquisitive look and said I thought you were picking up a prescription. As though he did connect the fact that they were the same thing.

-Then other day he was putting away somethings and ask this goes in the attic? I was busy cooking dinner and replied, "your doing what?" he repeated "I'm putting this in the attic" I looked and he was standing in front of the closet. I said, "you mean the closet?" He looked puzzled and replied, "I don't know why I said that".

-Here in the US summer is a time of reruns on TV. He will watch a show that he just watched in the past few months again as though it's the first time he has seen it.

-Sometimes while watching TV he doesn't understand what he is seeing/hearing and will ask what was that?

-He slipped & fell in the mud in our backyard. He wasn't hurt thank goodness.

-Zoloft dose has been doubled to 100mg and there is no change in behavior. Anxiety, Apathy, Motivation, etc. have not improved.

He still looks "Normal" to people that don't see him on a regular basis. Which is most of his family (his 80 year old parents and brothers). When we get together with them and he sits and talks with them, they think he is fine. He puts on a front and is exhausted after the visit.

Hope this post helps others.

[honjen43]

That is pretty much what I experienced with my husband! Without a diagnosis at that stage, his behavior made me very cross - something I now regret!

J also had Parkinson's symptoms of dragged leg, loss of strength, but also compulsive computer game playing, and refusal to discuss how he felt. Maybe he was not able because of my attitude!

We went on holiday and he suddenly developed a lean to left and seemed unaware of it. He also went snorkeling which we have done often but could not get up out of water. He seemed reluctant to help around the house. Latterly when he emptied the dishwasher, he got confused when he tried to empty and refill at same time. He said he lost track of what he was doing.

With a diagnosis this all began to make sense, although I had already begun to second guess that, tho I had thought Multiple System Atrophy. Was good to get a professional diagnosis that confirmed I was on the right track and that it was not just Parkinson's.

It is also good to understand that we too can see things the GP cannot and should follow our gut instinct if we feel we need more specialist input.

Outcome was no less distressing but at least confirmation of my fear helped me to deal with the progression and end stage.

Hugs to all still going through this journey.

Hugs

Jen xxx

[easterncedar]

My guy covered pretty well for a fair time, and and it is only now looking back I can see how quiet he had become in groups, and realize much damage had been done already in what we thought of as the early stages. Then once he started to fall regularly, that never really stopped. I took notes, too, and have been looking through them, trying to restore my own memory of the past few years. I ceased to think very well myself under the strain. Do take care of yourself, Alicia.

Peace and love to you and yours, Easterncedar

[yellowmarlene]

This is my first post. I could relate to so much you said especially the part that he looks Normal. Everyone around us says wow he looks so good. He sits and talks and he prepares himself with a front and then is exhausted also afterwards, maybe days. My husband is very active still but he surely has what he calls bad days. We are in 2 years of diagnose, about 3 - 4 years symptoms. Would like to know more of symptoms of others. Our diagnose was a rare type of psp and might be changing to psp/cbd or maybe even just cbd.My husband is 64 years old. He has never fallen but has balance issues and vision issues big time. Hope to hear from others with cbd / psp or just cbd

[AliciaB in reply to yellowmarlene]

It is so good to hear from you & others and know that I'm not going crazy. When people say he looks okay to them; other people aren't living this everyday.

My husband had never fallen until he slipped in the mud this past month. He is 62 years old.

[Jafarrar in reply to yellowmarlene]

My husband has CBD for about 4 yrs he was first diagnosed with Parkinson's. he has not walked in 2 yrs. he has not gone any ware for 3 yrs. he also watches the same thing over and over like he never seen it before. His vision is not good and understanding not good also no interest with anything else doesn't even want to go outside on the porch. His body is getting stiff hard to get his pants on he has been in continence for a year now.i got him a hospital bed but he does not want to sleep in it. He lives in his lift chair. It is getting toward I can't lift him any more he is dead weight he fell today when I was trying to get him off the portable Comde had to get some newborns to help get him up . This is getting much harder. God Bless You All.

[Karynleitner]

I can relate completely to your comment about your husband referring to the closet as the attic . My husband does that often ,. I sometimes think he's goofy or not thinking clearly . I usually find out his thought is completely correct, he is just replacing a noun with one that is not quite right.

[yellowmarlene]

I am going to start making notes also I can see it can be helpful. How old was your husband when first symptoms started do you think? His he still active? We think his is a slower psp/cbd or it's because we did a clinical trial with the drug Salsalate for 6 months and it might of helped.

[AliciaB in reply to yellowmarlene]

My husband was dx in Dec. 2016 age 62. I'm not really sure where we are in this journey/progression. Looking back I think it has been going on since fall of 2013. He was written up at work Nov. of 2013 for asking a teen to open his jacket because he thought he was shop lifting. He knew that was against company policy. It was something he never would have done before.