"Why am I so tired all the time?"

I appreciate how diificult it can be to explain to your mum why she is tired all the time, especially since the medical experts can only answer in a general way (just like they still cannot give a neurological answer as to why some PSP patients tend to fall backwards. It's not just because some have retrocollis- neck bends backwards, because those who have antecollis - necks bends forwards, also fall backwards - like my wife).

I think you can just simply repeat what you have already said about the brain working harder. It would be difficult for her to understand anything that tends to describe the complex nature of problems with many neurotransmitters and about the powerhouse of cells being the mitichondria that are now dysfunctional in PSP (and similar diseases).

I find the individual affects of PSP the most frustrating, even though I think I have a reasonable understanding of the neurological disease processes.Your mum's symptoms sound so close to my wife's symptoms but I cannot see her as in the final stages yet (although the progression can take a dive at any time, and I'm always anticipating this). My wife cannot walk any more except for a few shuffling steps while transferring. She could not look down, but now cannot look up. She has mild blepharospasm. She's choking more on liquids. She speaks less (although when she does she can hold a reasonable conversation with some words unable to be recalled). She makes noises instead of talking when very tired.

She seems generally tired all the time especially after any activity like a shower. However, she eats solid meals well, and is putting on a bit of weight because she is not moving. She only has stress incontinence when she coughs or laughs excessively (pseudobulbar affect). Unlike many PSP sufferers she sleeps well.

Sorry if I have rambled on, but just talking about this with other carers is helpful to me. There's no substitute for sharing our common experiences, because even many neurologists have limited "practical" experience with these atypical Parkinson's patients. They could gain a lot more knowledge by reading the blogs on this and simialr sites.

All the best with caring for your mum, and while I haven't been much use in answering your question about tiredness with PSP, I'm glad I have a better understanding of your position as a carer. It helps me put my experiences into perspective.

Hi Jan, I don't really know what to say to you, i have been in this situation so many times at the care home i worked in. There is not much you can say to your mum, just reassure her and try not to focus on her illness, try to tell her about good things, talk about the past and the family. You can just be there for her, is she not taking any food and fluids now? Just keep her comfortable and give lots of love. All the best Tisha xx

Just a post script Jan for your own information. There is strong evidence that the condition of chronic fatigue syndrome is connected with mitochondrial dysfunction, and this may expalin much of the tiredness in PSP.

My Neuro has had me on a 3-4 hour/day activity limitation since diagnosed last August. At first I thought it was over-kill. But he was adament about this restriction and repeated it again up to my recent visit with him on Monday of this week.

However, now he's modified it further to pay attention to my body and rest from the point forward for the rest of the day, still restricting me to 3-4 hours of activity, and light at that. I've noticed if I push past that point, I don't get away with it. It's not a 'mind' thing, it's a real thing. My symptoms worsen suddenly and then I'm down for the next day if not two.

I found quickly he was right from the beginning. It is because I as so tired all of the time. Period. I can wake up feeling rested but by noon or sooner, I'm just exhausted.

He said most of this symptom is due to the PSP. Since it's a movement disorder as well, our extremeties are working doubly hard, muscles, tendons, ligaments etc., as well as internal organs to some degree or the other. Also, he said those with PSP seldom sleep well and suffer from interrupted sleep because our muscles still contract/become rigid during sleep.

The other part is our medications tend to make us sleepy and/or are of a sedative nature.

Hope this helps.

Judy J

P.S. I was exhausted all of the time for a few years prior to my diagnoses, to be clear. I felt relieved when my Doc put the 3-4 hour activity limitation on me. It was if I needed that permission. I think getting the rest he says I require is helping my PSP not accerlate on me, which is the primary reason he put me on that restriction to begin with. Tho some symptoms have gotten worse, I still consider them "just a little worse". I'm okay with that.

HI

I HA VE PSP AND TEND TO WAKE EARLY ADN BE V RESTLESS MOS TOF THE DAY

I KNWO IT IS THR PSP BUT IT SI WEARING FOR MYSELF AND MY PARTNER AND MY CARER

I ALSO FALL MORE WHEN STRESSED OR WHENTIRED AND IT IS V DISATURBIGN 2 ANYONE WHO HEARS ME GO OVER

I CARASH ATO THE GROUDN AND SOKEMTIMES IT TAKES ME AGES TO GET UP (OR I NEED HELP IN GETTING UP)

SORRY I CANNOT BE OF MORE HELP

AS LONG AS UYOUR MUKM KNOWS YOU LOV EHER THA TISTHE MSO TIMPORTANT HTING

DO U HAVE ANY HOSPICEC CARE AVIALABLE/

LOL JILL

-

Hi Jill,

I like hearing from people who have PSP. Most posts are from the people who care for us.

I know what you mean about taking ages to get up. People around always try to get me up before I'm ready. It hurts to be pulled up and I'm afraid people will hurt themselves trying. If I'm not ready I'm afraid I'll fall again.

Barb B

I like hearing from the people with PSP, too, as it helps me understand what my partner experienced. Jill, of course, is a wonder and a dear! Ec

Hi I have been taking co enzyme Q 10 to give me more energy. But I don't find it that good. Recently our GP sent a pharmacist to review my meds & has asked me to see him about my meds which I will do this week. The pharmacist suggested I use multipack vitamin B instead of Q 10 I've just bought some so am yet to try them. I am very tired at present as we are getting ready to fly to Sydney on Friday evening & taking our 2 dogs my little adopted Sam is not well heart problem but our vet adjusted his meds & he's better although he could die any time we'll take the chance. He's my 'shadow' such a loving little dog. Cheers Mary

I've been taking Co Enzyme Q 10 consistently for about a month. I agree, it gives me some energy, but not enough to compensate. But I don't know that it's reasonable to expect to return to my previous energy level when I was well. I just read an article that magnesium is a great supplement for energy, and am considering adding it to my tool kit. I am at my own admission, a poor eater, so I'm not worried about over-doing it with supplements. And, my Internist, knowing all she knows about me, is adamant against taking a multi-vitamin, especially the all-inclusive ones with essential minerals. She considers them dangerous because too many of the minerals and some of the vitamins get stored in your tissue to a toxic level, with no where to go. It's just her opinion and my interpretation. I was just caught off-guard by her very strong opinion about multi-vitamins when I saw her 4-1; she went on a 10 minute, something close to a rant about it. I understand many doctors or specialists would disagree with her; it was just my experience with my Internist. But I'm going to give a low dose of Magnesium a try. If it doesn't increase my energy, or has adverse effects, I'll stop after 2 or 3 weeks.

I hope your trip has gone well. BTW, I feel that way about my dog, Dazzle. He'll be 12 in August. He's so attached to me and I to him, I call him 'my velcro dog'; our pets are family members & priceless, aren't they?

Take good care,

Judy J

Hi I have been taking co enzyme Q 10 to give me more energy. But I don't find it that good. Recently our GP sent a pharmacist to review my meds & has asked me to see him about my meds which I will do this week. The pharmacist suggested I use multipack vitamin B instead of Q 10 I've just bought some so am yet to try them. I am very tired at present as we are getting ready to fly to Sydney on Friday evening & taking our 2 dogs my little adopted Sam is not well heart problem but our vet adjusted his meds & he's better although he could die any time we'll take the chance. He's my 'shadow' such a loving little dog. Cheers Mary

Hi I have been taking co enzyme Q 10 to give me more energy. But I don't find it that good. Recently our GP sent a pharmacist to review my meds & has asked me to see him about my meds which I will do this week. The pharmacist suggested I use multipack vitamin B instead of Q 10 I've just bought some so am yet to try them. I am very tired at present as we are getting ready to fly to Sydney on Friday evening & taking our 2 dogs my little adopted Sam is not well heart problem but our vet adjusted his meds & he's better although he could die any time we'll take the chance. He's my 'shadow' such a loving little dog. Cheers Mary

Fatigue seems to be part of PSP. My wife tires easily. One event a week is all she can do well. Bless you and mom!

Jimbo

hi jan i believe the fatigue goes hand in hand with psp as well i think what jill and tish said was about the best thing you could and tell her you love her and reassure her try and get her confidence peter jones queensland australia psp sufferer

Hi Jan and everyone else,

My husband doesn't complain of tiredness but does not like getting up early in the morning.

Over the last two weeks he has started a gym programme, this was suggested by his new physiotherapist. After the first session he was wiped out for the rest of the day. Today he had another session only for 45 minutes and when he got home he just collapsed into a chair. Later in the day he managed to have 3 falls and couldn't keep his balance standing upright. He was also doubly incontinent twice. I'm starting to think the amount of exercise is too much for him.

We should listen to our bodies more and if they are telling us they are tired, take a break.

Peter3.

Thank you all for your informative replies.

Strelley your wife does seem to have the same problems as my Mum and seems to be at the same stage would be helpful to us both perhaps to stay in touch and maybe we could help each other out with experiences and solutions if there is any!

Tisha it is nice to see a carer so caring as you are and who takes the time to come on this website and help others, thank you for your advice.

Judy so sorry you have this terrible illness, my Mum is like yourself she used to be an early riser about 6am now she stays in bed until about 11am as she doesn't sleep well through the night and has to get up also to use the loo even when more often than not she doesn't do anything, by the time she is dressed and had breakfast she is falling asleep again, hope you are managing ok and take care.

Jill Ann so sorry to hear you too have this terrible illness, it's good you can come on this site and speak to others and get help and advice, we never leave Mum to walk or maneuver on her own (not that she could anyway) we always walked behind her holding her waist therefore after being diagnosed in Nov 2010 she hasn't fell thank goodness. We have got a hospice near us but haven't used them as yet but palliative care are involved now, thanks for replying and take care of yourself.

Mary tea sorry to hear you too have this terrible illness but lovely that you are going away with your dogs have a lovely time and take care.

Jim your wife sounds like my mum too I looked up Fatigue and it does sound very much like it another added problem to this awful illness take care and hope your wife is managing with it all.

Peter J so sorry to hear you too have this terrible illness, I tell my Mum I Love her everyday and give her kisses all the time as I always have she has been there for me and is and always has been a fantastic Mum and friend to me hope you get lots of Love too and thank you very much for your reply.

Peter3 so sorry too hear your husband has PSP too, maybe he is doing to much and yes I agree you have to listen to your body and take rest when you feel the need, I do think it is because your brain is working overtime now to make your body do the things that used to come so natural to us with no effort! take care of yourself and your husband.

Thanks again everyone very much appreciate your feedback.

Take care everyone Love Jan xx