susanT8403 Asked June 2010

Where can I get help dealing with my mom's rare Progressive Supranuclear Palsy (PSP) disease?

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Are there any suport grooups online, or even in the community? my zip code is 32817, I want to get as involved as possible!!! GOd sent u

want to be apart of any and all support groups u may offer, online would be awesome as I am disabled to, my mom has PSP, which is very rare.

The desease is extremely progressive, and causes of death are falls or pnewmonia, she is on a thicket diet, and is very impulsive but in full control of her faculties!!!!
which sometimes I wish wasnt so...as she realizes how bad things are going to get and are already. I want to participate in helping others and maybe even starting my own support group, for a legacy to mom....her condition was also very hard to diagnose. All I can to is keep her calm, safe, and secure, but the facility she is in, is making major health mistakes, thank God I caught a few, but I do have my own life and need to take care of myself in order to take care of her!!!!! add me to any and support groups either online or not hopefully not too far from me as I live in the 32817 sip code, I beg of u to help me keep calm and serene myself, so I can continue to take of her and my family

Has any new research been done yet on PSP that could help mom, exept for levopeda, anything to help her stay calm and at peace, like a support group?

I have legal assistance, but they must be very busy, because I am having a hard time getting responses, etc, moms life choices are next..

thanks so much in advance, God must have sent u to me!!!! thans so much in advance

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Jinx4740 Sep 2013
Debbie, I hope you can spend some good time with your mother. I would be interested in your comparison of UK vs USA medical system. I have been treated a few times as a tourist, and really liked the doctors I saw. They were very down-to-earth - no jargon.
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Debbie2008 Sep 2013
my mum has PSP and is now in the later stages - I live in florida and she is in the uk and is now in a nursing home. Its is very frustrating as it is now hard to understand what she is saying and she to is suffering from a UTI infection and is very confused and is hallucinating - they say it could be due to the infection - she is now on her 2nd course of antibiotics. People suffering from PSP become very apathetic - it seems they don't care about anything - they really cannot help it and it makes it difficult for the care givers. I am flying over to England Tuesday as Mum is not very well and I have not slept in weeks properly and I find myself waking up and worrying about her in the home. They take care of her but not like you would want. I printed a lot of info off "curePSP" - which I found very informative and also I am in touch with the PSP group in England - they have a dedicated PSP nurse and a Parkinson's nurse and they often help with any matters. I feel your pain - it is very hard - I only wish I could be back over in England with my mum. I have 2 brothers who help but it is not the same as a Daughter being there. I hope things get easier for you. Debbie - Alachua Florida
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susanT8403 Jun 2010
thanks so much for this response, as it has started my day over! I always go to see her even though she frustrates me..................I am kind and caring even even if I feel bad inside, I have to chalk it up to her being really sick, sicker than others, I was thinking that maybe if I didnt show up so often, she would start to think about things and appreciate me more, I am disabled and just learned how to drive agian,,,,,,,,,,,,,,only been on the road for 5 months and mostly dont feel safe behind the wheel, but I push anyway, I told mom this morning on the phone that I couldnt go to see her today as I have 3 doctors appointments back to back, but went anyway in between, not so sure why I found the need to do this knowing that I will be getting a treatment for my back, maybe fitted for another back brace,and occupational as well as pyhsical therapy, I also need a new MRI which my insurance is charging a a huge co-pay now, it was never like this before ! now because I am ;poor I cannot afford all the things and meds neccessary to keep me in good condition...........THis is also a source of fear for me, as I never know what to expect, when I go to the docs.........................frustrated and confused,,,,,,,,,,,,,,but still going to see mom as I know in my heart its the right thing to do...... I love her even though she has a few shortcoming, but who am I to say? I can point one finger and have 4 pointing right back at me!!!! so there it is I am a hugely concerned daughter who''s being there is a way to make sure they (nursing home ) stay on their toes!!!!!!! so its almost like a catch 22,,,,,,,,hanging in there and making sure mom feels content, safe, and loved all the time regardless what she does...... I dont take things personal anymore either..............why waste my energy on that when I know she is much worse off than most!!! I also remind her to spend her money to buy what ever she fancies, but she wont its her security blanket, so I do understand , and now have given her most of my clothes and pj's so that she stays comfy, all those things can eventually get replaced! moeny is not a huge object for me either!
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castoff Jun 2010
I know it's painful beyond what we think we can bear. My mom has become increasingly more shallow and selfish also. From what I've seen in the variuos forums on this site; it's quite common. For whatever reason; be it pain, regret, fear or dementia it happens often. Try to keep your emotions out of it. Hurting people hurt other people. Try to keep your compassion and not be offended. That seems to be the battle I find the hardest more than the business end of caregiving. We will receive our thanks from God. If not in this world then in the next.
His grace is new each day. Often and as the end draws nearer they are not themselves. Keep being your sweet self as best you can. Another caregiver recomended the Love&logic website to me. I found it helpful in dealing with a difficult mom. Check the testimonials. They can be a help with elders as well as children.
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susanT8403 Jun 2010
It really sucks when I go to see mom every day 3 times a day, and never get a thank u, or anything, I am her only daughter and none of the rest of our family even wants anything to do with her, she is very judgemental of people, even those who are worse off then her!!!! its so frustrating talking to her and all she has to say about people is how dumb they are, and how they dont matter,,,,,,,,,,,,,, she has no grattitude for me or anyone else, I even have to say thank you to myself in front of her to remind her of basic manors! I think starting to go there less will let her see how darn lucky she really is, some of the folks in there get NO COMPANY AT ALL!
Its really depressing,,,,,,,,,,,,,,,,,thanks for ur support, and that doesnt include me being her POA, accountant, and trustee, she never says thanx and I spend everyday (weekdays) working as if I had a full time job taking care of all her paperwork, doing her taxes now, because before she didnt care and didnt want to pay them! all she is concerned about is her money! all I want her to do is to spend it up while she is still with us, enjoy herself and stop being cheap with herself!!!! oh gosh its hard, and her desease is so progressive that everyday I see her disintergrating more and more!!!!
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castoff Jun 2010
Sounds like you're in a storm dear.
Trust God & trust God & trust God to get you & your family through it.
Don't take my thoughts as absolute, but I think UTIs are caused when ther is a blockage of some sort. Be it dirt or buildup of matter either inside the bladder or outside in the urethra. Holding urine too long when you have to go can also cause problems.
Cranberry juice (vitamin suppliments) and tomato juice tends to keep the bladder clean with Uric Acid.
I've heard a little vinegar works also but I haven't tried it (natures antibiotic). Small quantities of couse mixed in with water??? Check on this before you try it. Pickles are packed in vinegar. Our family doc reccomended vinegar when my hubby had the flu. Made sense to me.
You are correct to care for yourself. You can't care for another if you are out of commision yourself. Take care of you also.
Pray for wisdom & guidance. God has helped me so many times & through so much.
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susanT8403 Jun 2010
thanks so much for this info, it started my day off on the right track!!! have to go to the nursing home now, as now she has a urinary infection, as well as hallucinations, as that happens with old folks, whenever she gets a UT, what causes UT in the first place? this is hard stuff for me, mom wants to come back home desperately, but she wont get me any help at all. I am disabled too, and cannot take the risk of losing my health, or getting any worse with my owm disabilities! very confused hurt, and hate to have to see my mother suffer! now my husband was welding his truck last night and got metal shavings in his eye, he didnt wear goggles to protect himself!!! now he has a peice of his eye missing (cornea) as he did this at nite with no visabilility, and no gogles..................overwhemed as usual, thaks for your help and support!
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castoff Jun 2010
This is a wonderful site with Godly folks who are going through this along with you. In any given situation you will find a shoulder and or an answer.

AARP website is also good.
Area agency on Aging & Community service organizations.
Google your specific topic & you will be amazed at what you find.
Learning the hard way is a bite. Forwarned is forarmed. Try to know as much as you can up front. Try not to let your emotions get in the way.
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