newly diagnosed

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newly diagnosed

Postby achevalier » Fri Sep 25, 2009 4:25 pm

hi, my name is Annette and I was diagnosed with PSP last Fall. I'm 46, married and have 2 children- Isabelle (9) and Luc (7). I work and live in Frankfurt, Germany. Is there anyone out there near here who also has PSP whom I can contact? I am fluent in German but I'm American, so my English is much better. My symptoms have gotten worse since last year, I'd like to here how others handle things.
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Postby Robin » Fri Sep 25, 2009 4:58 pm

Hi Annette,

Sorry to hear about your PSP diagnosis.

There is the PSP-Europe Association, based in the UK. It may know of those dealing with PSP in Germany. See pspeur.org.

Joseph Blanc posted an article in German about PSP several months ago. See: http://forum.psp.org/viewtopic.php?t=7845
Perhaps you can find others dealing with PSP in Germany through that article.

Robin
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Postby eplowman » Fri Sep 25, 2009 11:40 pm

Hello, Annette,

Welcome to the forum.

You are so very young to have PSP. Do you know of anybody else in your blood-line family who exhibited similar symptoms?

You say the symptoms seem to be getting worse. What were the earliest ones? Unexplained falls? What are your current symptoms and their extent?

Are you falling most days? Do you drive? Do you have problems with vision?

Please invite your husband to join the forum also. It is a valuable source of information. The more he learns about PSP, and the increasing amount of care that will be needed, the better for you. You both need to be in this struggle together. You face some difficult challenges ahead, but your strong love for each other will help get you through them.

All the best,

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Postby Robin » Sat Sep 26, 2009 1:17 pm

Annette,
You might want to check out the website of Dan Brooks to see if your symptoms are similar to his. Dan has a diagnosis of atypical parkinsonism; his MD has said Dan has either MSA (which is similar to PD but there's a mix of autonomic symptoms, such as BP falling when standing, and parkinsonism, including falling) or PSP. Recently he held a webinar which I, as a caregiver, found very inspiring. You can see the notes I took; they are posted on this Forum.
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Postby Tnielsen » Thu Nov 19, 2009 9:15 am

I have only been on the forum once and it was the day before my mom passed away. That was in June. I now have a friend whose sister has been diagnosed with CBD, a neurological disease that is so similar to PSP. I felt I needed to get back on the forum, and Annette, I read your posting.

Annette, you are very young to have been diagnosed with this disease and I'm sending you my prayers and good wishes. Having young children the difficulties you will encounter need to be understood by you and by your children.

Some of the best advice I can give you, after watching my mom go through the disease, is to make plans now. Get things in place that will help you in the future. My mom did a lot of research about her disease, however, she was diagnosed with it when she was about 75 not in her 40's. She had symptoms for a couple years prior to that and we think ultimately had PSP about 10 years. She worked hard at keeping her body fit, she ate well, did all the exercises she was supposed to, went to physical therapy and also enjoyed massage therapy and chiropractic care. While it may scare you, read everything you can on your disease. My mom and dad made plans early to move out of their home and into an apartment that also had a nurse available. As they needed additional help, it was there. They eventually moved into assisted living and then a skilled nursing facility. My dad was an engineer, so through the years he made devices, platforms for chairs, special trays, etc. that aided my mom in every day life. We did research on what was available in the way of medical equipment and we were blessed a couple of years ago when our daughter met and eventually married who works in durable medical equipment. He has been a God send. He researched wheelchairs for us, walkers, bars for the bathroom, anything we asked of him, he found and got for us. Your comfort will become your family's number one concern. If you need to ask me specific questions, please post. I'll do my best to be honest with you, but with you being 30 years younger than my mom was at diagnosis may not make my information relative for you - I don't know. But what I've learned I'd be willing to share.

God bless you.

Tnielsen
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Thanks!

Postby achevalier » Fri Nov 20, 2009 5:19 pm

Just wanted to thank Robin, eplowman and Tnielsen for their very helpful and kind advice. I must admit I am very freightened, but I also know I have some wonderful people who are always there for me. Knowing there are others, strangers who are also willing to help - who send their best wishes and prayers - that takes some of the fear away.

I would like to know some more specifics on how this progresses. My husband and I are looking for a new apartment with an elevator or on the ground floor. I've applied for a handicap pass but was told it could take a few months. I often feel overwelmed, totally without energy and so tired. I'm still working (part-time) and taking care of our kids. There isn't much time for therapy at this point, I do have speach therapy once a week and am usually stressed that day trying to make our daily life fit around it.

Oh well, somehow things will work out. Thanks agian and my very best to everyone who reads this! My prayers are for peace of mind and heart and strength for the future.

Annette
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Postby eplowman » Sat Nov 21, 2009 12:06 am

Annette,

What are the symptoms that took you to the doctor in the beginning? In what ways are they getting worse?

Have you been having unexplained falls? If so, this poses a serious risk of injury to yourself and your children.

Are you still driving? That also poses risk of damage, injury, and possible death for you and others.

I know you are frightened and deeply troubled. My wife was, too. You are wise and courageous to acknowledge the problem and not be in denial. And it is great that you are making preparations for changes in living arrangements and life style.

It would be well if your husband could visit this forum. You will need his support increasingly as time goes on. And he will need understanding and support as he seeks information about this disease and about how best to care for you. There are understanding, caring, and compassionate folks here, many of whom are very knowledgeable about PSP and what it takes to help loved ones with PSP get through the difficult times. They stand ready to help in any way they can.

There are some medical experts on PSP in Germany. I will try to track down their contact information and send it along to you. Possibly, there could be a support group in the Frankfurt area they may know about.

Where were you diagnosed and by whom? A neurologist in private practice? Doctors at a major medical school? Or ?

Wishing you all the best in the days ahead.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Postby Bonkers » Tue Dec 22, 2009 3:01 pm

I read your post. You touch my heart and very soul. Just something about you that really touched the very depths of my inner being.

My Dad had PSP. He was a very precise man in all the things he took on. He was a very caring man. But when he learned he had PSP and what the future held for him---well that was when my sister and I stepped in and told him that we would support him, be there for him, help him, cry with him if need be (and my Dad NEVER cried in front of us before that) and then we told him that we may not be the best caregivers but we were all he had and that we loved him very much. THat the main thing we wanted to do was to do what he wanted done. We did not want to force therapy or treatments on him if he did not want them.

I guess what I am trying to say is that even thouogh you have a diagnosis of PSP----what I told my DAd was "that we can adapt and overcome". I think Clint EAstwood used that line in one of his movies. But we just told Dad that whatever PSP could throw at us---we would adapt to it and overcome. For every new thing PSP reared up with---we came up with a new plan to adapt and overcome the problem. Just think positive. And I know that will be hard at times---but you can do it!!!!! You are young and you are strong---you can "adapt and overcome" and continue to live your life and contribute to your children's upbringing! Just take one day at a time as that is all any human has on this earth. And know that at this forum are many, many, many people who have traveled the path of PSP as a patient or as a caregiver to a patient. You are NOT alone in this --- so many of us here understand the frustration and the hurt that comes with every day life with PSP. Come here anytime---you can rant---you can rave---you can just sit a spell if need be---you are ALWAYS welcome here anytime!!!!!
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Postby achevalier » Tue Feb 02, 2010 9:27 pm

Hi Bonkers,

I haven't been in the forum for quite some time, sometimes I just have to step away. Thanks for ýour kind words, they are a really nice welcome back!

You know, I'm doing fine, even though my symptoms/side effects(?) are getting worse. I have wonderful people around me that help keep me healthy - mind, spirit and body. We are learning from each other and one of the most important things I've come to understand is to be grateful - and there is always something to be thankful for, usually lots of things when you start to really think about it. This might sound corny, but it makes life pleasant and that works for me.

It sounds like your Dad was a great guy.

Take care.

Annette
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