In Search Of Clarity; I Don't Think I'm Trying Hard Enough.

[JudyJ]

I've been very confused lately; to an almost immobilizing degree. Also haven't felt well for a few weeks. More falling & imblance, excessively tired, confused, and this repetitive voice in my head (my own voice)..."Why am I not trying harder to get healthier?"

I was diagnosed 8-12 but in hindsight, there's no doubt in my mind the symptoms started as early as 2010. I posted previously questions about staging w/PSP; I've let that one go.

I Met with a social worker from the county I just moved from, several times, once diagnosed. Her 2 solutions were to become homeless, or get rid of all assets to get on Medicaid, and get into a subsidized apartment or assisted living ASAP. That would also mean getting rid of adored pets & displacing a daughter with special needs who lived with me.

At the onset of my diagnosis, tho I have much respect for my NEURO, he kept insisting I get my final affairs in order, give power of attorney to someone, get a health care directive, create a will, & plan a funeral, all ASAP.

Doesn't get much bleaker than that. I was certain intuitively if I did what my social worker suggested, moving into a subsidized apartment or assisted living, I would slowly lose my will to live.

The people who know me and/or have been close to me have known of my undesirable circumstances with debt, health problems, depression, no where to move to because I couldn't afford to fix the house to sell it, and I had no credit rating to rent an apaprtment. Also, the challenges of being a single parent. That was all prior to my PSP diagnosis. They just watched form the side.

My immediate family was always unsupportive (lots of long-term chemical dependency/mental health issues,etc.) I was the 'bad guy'. When I found the guts I would occssionally bring up how much harm was being done to the family because of the amount of drinking, so I was out of the circle. Finally gave up on having expectations from them. Yet, when it came to my girls, would find myself furious many a time because they were discarded by default because of me.

When the PSP diagnosis came, I was suddenly surrounded in a positive way by a few family members & some long-time friends who are 'my family'. Funds were made available to get us into this modest but lovely one level home we are living in now.

Renovations are still being made on the old house, which I'm more involved in than I was told I'd be. But I'm it tires me. Sometimes a lot. And somehow in my furry mind, that translates to being 'ungrateful' considering how blessed I've become.

My symptoms have accelerated over the fall and winter. See my Neuro every 6 weeks now as well as a therapist once a week. I will admit to feeling more depressed starting around the holidays. More falling/imbalance/confusion, difficulty speaking, and chronic pain.

A considerable amount of the old house have been brought to the new house to sort thru to toss, donate, repurpose. An overwhelming job indeed. I don't and haven't felt up to the task. This also translates out of my 'furry' mind that I'm ungrateful because I'm not getting the job done. I am so tired, most of the time. Some days the smallest of tasks take all I've got

My daughter, Melissa, came home from college for the weekend Lots of giggles & hanging around before she left Saturday to spend the rest of the weekend with her boyfriend. It was good.

My oldest daughter, Katy, approached me in the most direct, yet delicate way, out of concern. She said both she and Missy have noticed since the holidays I'm not eating much. Rather, what I am eating isn't good for me, and they're both concerned. Explained as best I could I didn't have much of an appetite (truth is starting to have problems with swallowing.) But as I said those words, they didn't even pass muster with me...I'm not trying hard enough. Why, now, of all times, am I not making a stronger effort to care for myself by eating better? I feel bad. Maybe a should.

That got me thinking about the past several months and the coming together of people, most who don't know each other, to make my life easier, have a lovely home to try to get healthier in, and have pressure taken off my back that's been there for years. Yet, I'm not getting better, seems I'm regressing. The only answer I keep coming back with is "I'm not trying hard enough." I've gotten a few terse words from a few involved who've said "with all that's been done for you, you should be getting better!" That hurt a lot. If it were only so simple.

My Mother, 74, called today. By her own admission, doesn't want to know the details of PSP "because it's too much for me to handle". Duly noted, but I'm living it, so it's created distance between us. She went on to state 'I would be feeling a whole lot better if I ate a proper diet, got more exercise, etc.' That led me back again to I'm not trying hard enough.

This isn't about some neurotic need or liking to be sick. At All. I'm only 54. Still have some sass & vinegar left in me. Some hopes and dreams and some why not's? Why I'm not pushing with all my might toward better health, and doing what's necessary to make that happen, or at least TRY, I can't explain. Maybe it's all been too much in such a snapshot of time. Maybe it's because I've been feeling quite unwell, but I don't understand why I'm not trying harder.

PSP is real. I'm living it, I'm experiencing it. Sometimes I wish people could get in my head and experience my reality and realise it just isn't that simple.

The question remains with me. Why am I not trying harder to feel better, to take good care of myself, to nurture to parts of me that need nurturing. For the first time, I feel like I'm being indulgent, selfish, not trying hard enough at both mine and others expenses. Am I going nuts? Is it simply true? Is it at least in part, the disease talking? I truly don't know.

[peterjones]

hi judy how are you today ok i hope\ well mate in 2004 i was told to go home and get my affairs in order make a will \ power of attorney \ do all the necessary things that one has to do before you '';drop off the perch''\ which had already been done i must add [[ because they are so important]]

well it frightened the life out of my wife and myself and we told the kids what had happened that i was not expected to live much longer\\ after taking pills for 2 and a half years\\ so we all had a good cry and then got on with living and that how its been since 2004 \ i just forgot what he told me and went to another neuro who told me i had something else so off we went onto another so far i had motor neurone \\ had a stroke \\ had parkinsonism an finaly i ended up with psp after 3 neuros later \ so they dont know everything i know all these things are closely related but i thought i think i will become a brain surgeon\\ but getting back to the subject \ i always think its alright until you walk in someone else shoes mate you certainly have not been given a great deal of support for yourself'' you can choose your friends but cannot choose your relations '' so the say how very true \\well mate your certainly not going NUTS thats for squirrells \ look mate this was designed to cheer you up \\ to say your not alone with any of the things you have wrong with you but to read it just take a deep breath and go for it because im a bugger for full stops capital letters and commas i never seem to have time to put them in \\\another product of psp..\\ who knows\\ take care look after yourself remember what i told you before laughter is the best medicine for everybody forget all that negative stuff your not trying hard enough they can always have my psp to see if they can try any harder SMILE

peter jones queensland australia psp sufferer

[JudyJ in reply to peterjones]

Can't tell you how much I appreciate your candor/humor/and realistic talk. You always manage to put smile on my face...that lasts.

[jillannf6]

hi judy

s o sorry you r havign a bad time fo it!

i really am

liek peter jones i am pretty sur ei ha ve hte slow sor t fo PSP and despite the fact tha t i have to live iwth it 24 / 7 and there is no respite for me it is impossibel for someone else othe rthant people hwo ha ve th e illness to know wha tit is like (and htei rcarers)

so hang on in there

lol JIll

and a smiel as spring is on the way here

i am offf to a lcoal PSP meetign today !!

[jacq61]

Hi Judy. From experiencing this journey with my mum I can categorically say that the way you're feeling has nothing to do with 'not trying hard enough' and all to do with PSP. It robbed mum of a lot of energy and motivation and ability to organize herself.

You're going through the most difficult of times with pain, confusion, falling over etc. You are amazing to be handling it as well as you are. It's possible you may be suffering from clinical depression which will further exacerbate the feelings. I wish so much I could wave a wand and make it go away for you ~ I hate this disease!

Please don't berate yourself for the way you're coping/feeling ~ I'm truly in awe of your attitude and your ability to verbalize your thoughts. I sincerely hope you have people around you that you can rely on for help and support, be it practical or emotional. PSP is not an illness that you can soldier on on your own with. Look after yourself and know you're an incredible lady xx

[CateT]

I completely agree with everything the post above says. And also the invaluable support from those suffering along with you. Be easy on yourself and educate those around you.

x

[Kathy]

Dear Judy,

You are being too hard on yourself.

Fatigue is one of the well recognised symptoms of PSP. Learning to deal with it is a skill that takes practise! You need to learn pacing strategies and energy conservation techniques. Ask your neurologist to refer you to a physiotherapist or occupational therapist who should be able to help you with this. They should also be able to teach you some relaxation techniques.

You have had some major upheavals in your life recently. Moving house is one of the most stresful things you can put yourself thru! Stress also has a negative impact on the symptoms of PSP. When Mum and Dad had to have a much loved pet put to sleep Mum couldn't stand up for 2 days!!

Depression is another well known symptom of PSP, Are you on anti-depressants? If not, they might be worth a try.

From the sound of things you could also do with seeing a speech therapist for a swallow assessment. Again, your neurologist should be able to advise you. Also, get him to rule out any infections (urine and chest are the usual culprits) as this could be the reason you are feeling so unwell.

Finally, hard as it is to hear this, do remember that you can't "fix" PSP Sometimes nurturing yourself means taking it easy, especially when everyday life can feel like an uphill struggle.

Do take care. Come back to this site as often as you need/want and keep asking. People here can get inside your head, have experience of your reality and DO realise that it's not that simple!

BIG HUGS

love Kathy xxx

[Hidden]

Dear Judy, as already pointed out the PSP does rob you of energy.Mum became exhausted after eating and gradually needed naps in the middle of a meal. This is where a nutrionist can help you to find higly efficient foods that are easy to eat but full of important nutrirents. As you say your mum does want to know the details of the illness but she needs to realise her advice is not helping you because it is not tailored to your specific needs.Can you talk to a speech and language therapist via your local hospital as she will help to fight your corner in the long run and explain things to others who may not understand your needs.

I cannot emphathise how important it is to get someone to act on your behalf in an official capacity, both financial and medically because there will be battles to fight and in particular if it is not family doing it for you, the people acting on your behalf need a strong power to get things done for you in the future and get what you need and want. You may worry you will make your daughter and animals homeless but it may happen anyway as the disease is unpredicatable and at least this way if you plan it yourself you are in control and can have a say in the matter. I fought battle after battle with various authorities over mum and if I had not got LPA I would have got nowhere. Also make sure your will is watertight as that has been the most useful thing for my sister and I wnen dealing with everything afterwards when we were feeling traumatised and bereaved. As Peter said once it's done you can forget about it and move on, taking each day as it comes and enjoying life while you can.

Best wishes,

Dianne x

[mummybear]

Hi Judyj, hope tomorrow turns out a better day for you. Everyone is giving you the best advice, so please take it? I would just like to mention that if your daughter can get a print out of PSP the condition and symptoms and you photocopy them for all the family and friends, their is many many sites that tell you, just pick the best one as they are all different, or ask the specialist for one when you see him. Hopefully the family will read this and begin to understand whats happening, so good luck with that! Also may i mention that whatever you feel about your family and friends you tell them now! as when the swallowing gets worse it may be to hard for you to do so and the apathy may make you not bother about it? so the Girls and your family might love to hear how much you love them? ( it may also make them read the symptoms with any luck. Please rest when you need it, top quality nutrition and staying positive are the key things. thinking of you and don't stress!

[springbank]

I think you 2nd last paragraph sums up the attitude to people with PSP. It is such a difficult disease to understand and deal with as very few people have contact with the sufferers. The medical profession are in general are not at all knowledgeable. You need to encourage the people who are willing to help because it does not get easier.

Get Power of Attorney so someone you REALLY trust can act on your behalf further down the line. This does not have to be a member of your family.

Get the little cards from the PSP association to explain the symptoms to people you have contact with.

I think you need as much outside help as is possible so you can try to relax. Let go of some of your responsibilities - someone will have to take them on at some time so try to ease the transition.

Your family really need to understand the full facts on PSP, send them the details, they cannot bury their head in the sand forever.

Sorry if this sounds harsh but PSP is harsh and cruel. My husband died nearly two years ago and PSP still lives and haunts me.

Stay on this site and feel free to ask, there is lots of practical and helpful advice to be had.

Finally I think you need a great big hug, Just keep doing the things you can manage.

Best regards.

[jimandsharynp]

Judy, My wife has PSP and I do know that fatigue is a HUGE problem for her. One event and the next day she must get lots of rest. Fatigue leads to he balance being WAY worse and falls more probable. Although she is taking minimum vitamins we try to eat "right" but don't over think it. We never were "healty nuts" and we aren't doing anything different in that area since the PSP started. The answer to your question is another question. Your question "Why am I not trying harder to do better?" The answer is "Will trying harder change my PSP circumstances?". I think, from my experience, that PSP is a road and the patient is traveling that road. We know where the road ultimately leads. We can't get off the road. We must endure the rutts and bumps in the road but minimize them as much as possible. We have to realize that no matter how "hard we try" the road is the road and we can't change it much. Sorry for the analogy but that's how I see PSP. I never say to my dear wife "You must try harder". She is coping the best she can and "trying harder" isn't in the mix and doesn't help. Sorry to be such a "downer". I think you just need to stop over analyzing your situation and more importantly stop beating yourself up over things.

Jimbo

[peterjones in reply to jimandsharynp]

JIM AND SHARRYN P HI JIM JUST WANTED YOU TO KNOW I THINK YOU SUMMED IT UP VERY NICELY PETERJONES QUEENSLAND AUSTRALIA PSP SUFFERER

[JudyJ]

Want to leave a huge 'THANK YOU ALL!' just for right now; want to reply to some posts specifically. After I posted this blog yesterday, I somewhat regretted it; actually I was scared to death about what I might read in the replies. Why? Part of it's 'just my stuff', but mostly because it isn't easy for me to admit to my vulnerabilities; I've had quite a lifetime of being conditioned to fake strong even if I didn't feel it, never ask for help no matter how badly you need it, etc. And, yes, I'm in therapy to undo this tangled knot. But here you are, supporitive as ever, AND helping to clarify what I'm experiencing has much to do with PSP. Can't tell you how reassuring that is to me especially since I've begun to feel like I'm living in a vacumn. The best and warmest of wishes to everyone of you.

With great respect and love,

Judy Johnson

MN, USA

[hmfsli]

Hi Judy,

Was wondering what I could add to all the excellent advice and encouragement given above and I suspect the answer is not much, however I would like to make an observation. From your post above and your previous posts I have the impression that throughout your life you have had to the 'strong one', making good decisions, caring for your daughters in trying circumstances and generally being the one who gets things done. I can therefore imagine that it must be extremely difficult to see those roles reversed; to be the one who is cared for, the one who needs someone else's shoulder to lean on, the one who needs something done for them. My Mum was always the 'doer' and several times we have had to say to her that it is our turn now to do the doing.

Please, please, please don't be so hard on yourself; with the greatest respect, you are not Wonder Woman! You are however an incredibly strong woman who has achieved a lot and who is dealing with a life-limiting illness without trying to be too much of a burden on others. (I am pretty sure those who love you don't see you as a burden by the way.)

Please take care of yourself.

Hugs

h

[Peter3]

Hi Judy,

Most people have said everything, but I would like to reiterate that from your blog you come across as being very strong, coping with what must be one of the worst conditions anyone could develop.

My husband was diagnosed with psp in 2011 and the last two years has seen a relentless decline in his abilities to do much for himself, he is loosing himself and we are also loosing my dear husband. He becomes tired very easily, shows little, if any interest in doing anything, but does appear to enjoy himself when we go out with friends.

Your blog, Jill's and Peter Jones's help me the most, because you all express what psp is like to live with 24/7. My husband isn't able to express himself the way you have on this site. For this I thank you. Be kind to yourself, but also keep blogging.

Best wishes

Peter3.

[NannaB]

Hi Judy,

Like Peter3, reading blogs from you and others with PSP have helped me to understand what my husband is going through. He has never been able to express his feelings and hasn't told me how he really feels about having PSP. He is always very positive and laughs a lot but will also cry easily watching a film, listening to music or a play on the radio. I can see what PSP is doing to him but have a better understanding reading your blogs of what's going on in his mind. It's hard going from care giver to one who needs care but you deserve to be looked after so accept any help you are offered. Take care and keep blogging.

NannaB

[CyndyLouBlue]

Another person on this forum suggested taking Coconut oil to help with the falls. I have read of its use in helping with dementia and depression. It might be useful to you across a variety of symptoms and might help you feel that in doing an experiment you are "doing something" toward helping yourself. Go online and research Coconut oil and Dementia for ideas of uses and amounts taken.

I feel it is really important to be kind to yourself. The disease beats you up enough with out helping it along yourself. I remember before my MIL was diagnosed we are putting considerable pressure on her to exercise and eat better. We realize now that she was probably where you are now. Every family is different, of course, but I feel that knowledge is the first weapon in fighting this disease. If everyone understands the impact the disease has on the patient then allowances can be made and ways devised to help with the quality of life at whatever stage presents itself. It has been a sort of hell for all of us but I know that I have valued my time with Doris and bonded with her in a way that would probably not happened without this disease. Please keep using this forum as a place to safely "off-load" how you are feeling and know that people here truly care.

If you try the Coconut Oil can you keep us posted and let us know how you feel it has helped or not?

All best wishes,

Cynthia

[villagebabe]

You are doing the best you can in a very difficult situation. You are doing right not to give up. Just hang in there and know we in the same boat and paddling as fast as we can too.