my wife keeps saying that she feels sick all the time,i tell her sorry nothing i can do,

[yoblet]

she was diagnosed with cbd last year any ideas?

[SharonAB]

Dear Yoblet,

Can you please explain a little further please. Is it a sickness that your wife can isolate? My husband used to say he was feeling sick for which I could not help until (with the help of OT/physiotherapists/speech/dentist etc) bit by bit we isolated where. And then we were able to concerntrate on a particular part of his body, and then another.. and so on.. For example - Do you mean sick in the stomach - gastro/reflux type of sick. or head - dizzy when standing? or muscles tight/sore? Back - what part etc

Regards,

Alana - Western Australia

N.B. It is still a process that we have to use as John does not seem to be able to isolate where the pain, sickness or hurt is coming from. For example if he cuts his leg pain - the pain does not seem to register in that area until hours or days later.

[peterjones]

hi yoblet same question where abouts is she sick mate or try taking her to her local GP for a start and get her checked over or her neurologist that is what id be doing peter jones queensland australia psp sufferer

[Hidden]

I agree with the above but also mum had a little of this and it turned out to be her eyes as the muscles weren't always working properly there and she would go ever so slightly cross eyed. The constant refocusing made her nauseous due to double vision.. I found that as we kept things dimmer either restricting the sun in her room or using sunglasses this eased.Could be worth a try for an elimination quick fix?

Dianne x

[yoblet in reply to Hidden]

Hi Dianne,

this looks to be the answer as I have noticed her eyes are not moving as fast as they used to, Thanks a million all you people this is the first time of using this site all I can say I don't feel alone.

Terry x

[Kathy]

Hi Yoblet,

Personal question....... is your wife constipated?? This can make you feel sicky and is easily resolved. If not, I would suggest chatting to the GP.

Hope she feels better soon x

[JudyJ]

Yoblet:

I am on the younger side of PSP; age 54. Diagnosed last August, but the symptoms started slowly 2010 or sooner til they became consistent enough to be diagnosed.

I agree with the others; PSP affects so many different organs/funtions/muscles, etc., it's overwhelming to both the person with PSP AND the caretaker.

Perhaps the best you can do for her is to tell her you 'can' help her, with some specific input from her what's bothering her the worst, which may be more than one thing. Then have her seen by a Doc who may be able to treat the symptom and minimize the discomfort.

What I've learned since my diagnosis and the few years leading up to them is I never felt well; it still applies today. Because of it's degenerative nature and sometimes a symphony of symptoms acting up at the same time, to 'feel well', I've determined, is an unrealistic expectation. Rather, I've changed my focus to improving some of the more debilitating symptoms. Some days feel like victories; some days are miserable. Overall, the chronic fatigue that goes with PSP is real and debilitating by itself.

I do feel blessed in one area, tho. A year ago at this time and into the first 4 months of being diagnosed, my mental cognition was poor overall. Confusion, slurred words, loss of knowing what time/day/year I was dealing with. It was very, very scary. Not to mention frustrating for myself and those around me.

To keep it simple, he started me on what I'll call a memory med (broad term) in December, then added a second in January, bumping that dose in April. I've come a long way back in that sense compared to a year ago. I am fortunate. My mental clarity has come up and stabilized. It seems to only slip if I experience a few nights of good sleep, than I struggle.

However, the physical symptoms are worse and it's discouraging some days, a personal challenge others. I do know I feel very uncomfortable around people who aren't willing to embrace what's happening to me. Some in my life had become quite judgmental of me, meaning I wasn't trying hard enough, don't want to get well, etc. That is a bunch of malarkey and only added to my sense of loss of empowerment; had to cut them loose; it was harmful to my attitude and spirit.

I just never feel well. Low energy, muscle cramps, sore eyes, injuries from falls, I could go on and on. I doubt I will ever 'feel well again', meaning over a sustained period of time. Think it just comes with the territory. These days I shoot for small goals, but if attained, they're huge. Such as having a comfortable, active part of one day in which I felt balanced, had a bit of energy, and felt I contributed something to our corner of the universe.

I know it is a very hard job being a caretaker, and that's understated. You can help her when she says she doesn't feel well by just validating how she feels. And those other small steps; trying to treat the symptoms that are the most bothersome for her.

Best wishes to you and her; I'll keep both of you in my thoughts and prayers.

Judy J

[JudyJ in reply to JudyJ]

Correction - meant my mental cognition slips if I don't sleep well for a night or two. Guess that applies to well people to, tho. I do know I don't care to revisit the troubles I was experiencing mentally a year ago, for a very, very long time.