Very happy to see you all : Hi I’m Rhonda... - PSP Association

PSP Association
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Very happy to see you all

Rhonda838
Rhonda838

Hi I’m Rhonda Caples 56 and diagnosed with PSP three months ago.. bummer. I’ve been doing ok I guess. My doctor told me yesterday that I need a wheelchair... well I’m going to use my new walker first! I would love to talk with anyone out there with PSP!!

54 Replies
oldestnewest

Hi Rhonda

I'm so sorry you have to face this illness and there are a lot of good folk here who will stand by you.

You look great.

But I am writing to you urgently:

Best advice is not to post email addresses and phone numbers on a public site.

Scammers have systems which scour the internet collect this information and sell it on.

You can always share information privately to individuals via personal messaging once you decide they are safe and authentic.

At the bottom right of your post is a drop down menu (See the chevron) you can select edit there.

It isn't for me to say you can't do this... But you are advertising your vulnerability to the worst people you can imagine! Not the people here, but those who search for the information you are giving and then scam you - big time - It's an industry.

I'm just very concerned for your safety.

Hugs to you

Kevin

Rhonda838
Rhonda838 in reply to Kevin_1

I changed it

raincitygirl
raincitygirl in reply to Kevin_1

Aten'm t we lucky to have Kevin look out for us? Truly...:-)

Anne G.

raincitygirl
raincitygirl in reply to Kevin_1

Oops - sent too fast..! Meant to add: Welcome to the tribe, Rhonda :-)

Anne G.

Hi Anne, thanks for the welcome! 😀

Kevin is right. Edit your post to delete the contact information. Better you do your interaction here.

If you read this site regularly you will get a better idea where you are. I don’t know if you need a wheel chair just yet. You might. The only treatment for this disease is exercise. Staying physically active is very important. Are you in physical therapy? If not find out where you could go. An occupational therapist would be good as well. They help with how to do things around the house or anywhere else.

Rhonda838
Rhonda838 in reply to Jeff166

Thank you Jeff, I deleted my info...

Kevin_1
Kevin_1 in reply to Rhonda838

(Sighs of relief ) :)

Welcome to a warm and supportive site.

I admire you attitude.

Welcome and post away freely here - I've never seen any flaming or blaming or judging over five years of being here.

It's a safe place.

Warmly

Kevin

Hi, Rhonda! Nice to meet you. That's a lovely photograph. Although most of the posting here is from carers and family, there are several wonderful and generous folks who are dealing with the PSP diagnosis, too.I hope someone chimes in for you.

Our neurologist prescribed a wheelchair long before my guy needed it. The PT he was given helped a lot to keep him going. We loved the LSVT Big program. It was actually kind of fun, and we did the exercises together. I hope you have access to something like that.

Love and peace,

Easterncedar

Thanks for the shout out! Yes I will be starting PT soon

Hi Rhonda welcome to the best site ever. Have you got family to help you through this? My husband was diagnosed in 2013 been in a wheelchair for the last 2 years. Sending you a big hug. Yvonne xxxx

Hi Yvonne how are you? So glad to see someone out there with this awful disease!! Let’s be friends

Hi Rhonda,

I agree with the others, edit and delete your contact details. I don’t know which country you are in but in the U.K. there are “local” support groups. If you contact the PSP Association they will be able to tell you where your nearest meeting is.

My husband wasn’t keen on having a wheelchair while he could still walk. Obviously we both wanted him to keep mobile but we couldn’t go very far as he would become very slow after walking quite short distances. He could still walk a long way but very slowly. I persuaded him to let me get him a lightweight chair we could throw in the back of the car so we could go further afield. Walking along the sea front or in large parks and gardens, he would push the chair, using it like a walker. When he became slow, if it started to rain he could then sit in it and I pushed him. We often took our food with us and he could sit in the char if we couldn’t find anywhere else. I could sit on the grass but he would never have been able to get up again without me straining my back to help him. We could cover much further distances. Eventually, when he was unable to walk, we got an electric wheelchair and were able to walk very long distances.

I’m sorry you are living with this distressing condition but there is still time to do good things. After my husband was diagnosed we went on a Norwegian Cruise and took a trip in a hot air balloon. We continued to go away on holiday for several years and found properties adapted for those with physically difficulties.

You’ll have lots of responses to posts and after time will regard folk here as friends.

Very best wishes

Nanna B

XxxX

Rhonda838
Rhonda838 in reply to NannaB

Thank you so much for your story! Is your husband still with you? I know I need more excising for sure will be going back to PT soon

Sadly he isn’t but we were able to make many happy memories after diagnosis and he decided it was time to go. He had no pain or fear and wasn’t on any medication. He went very peacefully. Sadly, after diagnosis we lost several friends suddenly, or after short illnesses. None of us know when our time will run out do we?

That is a lovely photo of you Rhonda.

Best wishes.

XxxX

Thank you! So sorry for your loss! Can I ask you how long did he live after diagnoses? If that’s not ok to ask it’s ok

Hi Rhonda! I am relatively new here myself ... and, yes, it’s okay to ask that. Or least no one told me different when I asked the same question!

As NannaB said, you’ll find friends here! I find myself checking in here most days ... there’s always something to learn and such caring and especially understanding folks.

Welcome!

xoDorie

Welcome, Rhonda,

I cared for my husband, who had PSP. Sadly he died last October.

He was older than you when he was diagnosed. - 80 - had had symptoms for a few years before.

Keep active but be prepared for the next stage so you can make the best of it. We also travelled after diagnosis - an adventure to Costa Rica.

love from Jean

Rhonda838
Rhonda838 in reply to doglington

Thank you for the advice Jean... 😀

Hidden
Hidden

Welcome Rhonda,very sorry your having to deal with this disease.You could of not found a more knowledgeable site.

Dee in BC

Rhonda838
Rhonda838 in reply to Hidden

Thanks Dee.

Hi Rhonda,

I am new myself (my husband has PSP) and can attest to just how wonderfully supportive everyone in this group is. Must admit that my emotions have been on a real roller coaster ride this week. First, discovering that I am not alone. Secondly, FEELING that I am not alone anymore.

Welcome - Alice

Hi Alice thanks for the nice welcome... I sure can use a friend right now myself! So nice to meet you. I live in ga and I’m marred to my best friend, and have two great boys! Is this a safe place to talk personal stuff?

aliciamq
aliciamq in reply to Rhonda838

Just don't tell us your real name!!!!!😆😆😆 Kidding, of course👍🏼Relax and be comfortable. As someone said - You will learn something every time you come on!!! Everyone will get you through💗

Rhonda838
Rhonda838 in reply to aliciamq

😂 thanks

Hi Rhonda ,this is a safe place to talk.My husband was DX with PBP in August .His started with speech issue's. He always sounded like he had laryngitis .We spent over 2 years seeing doctor's. The last two neurologist DX him with PBP .He is still very active , and keeps busy. He hasn't talked since last January. He has a text to talk , and a boogie board to write on.This disease is always a shock .I'm so sorry you and your family are having to go through this.The best advice from our DR's is not to wait to long for procedures , if you need them.Jim had a feeding peg put in , in November, he also developed swallowing issues.He c takes all his meds and water with it.He can still eat soft foods .If you have any questions. please ask.

Hi Rhonda, joined the site 6 months ago as diagnosed originally with CBD. They now think it’s Parkinsons but am staying with is site as the info is great and they could still be wrong. My husband and I go to a support group for PSP/CBD sufferers( we are in the Uk) so hope you have similar where you are.

Welcome!

Jayne

Hi Rhonda

My dad has PSP. Excercise standing, sitting, even lying down. Excercise has been the best thing for him. It definitely helps. Also eating high fibre diet... no pasta or potatoes! No sugar no sweets. Plus eat early evening and leave 12 hours before you eat again in the morning. Plenty of fluids. These things have helped him a lot! We still get to enjoy time together, music, colouring, a bit of TV. He plays ping pong from his wheelchair these days. It’s all about trying new things! My mother is his main carer but she has got help (it made everything easier). He first had symptoms in 2013. He will be 80 this year.

X

PDDJED
PDDJED in reply to PDDJED

Ps he has been in and out of a wheel chair for some time, it seems the disease goes in waves and he has good weeks and bad ones. Good luck, and keep smiling! You look so well in your picture!!

Rhonda838
Rhonda838 in reply to PDDJED

Ya I have good weeks and bad weeks

raincitygirl
raincitygirl in reply to PDDJED

Interesting PDDJED; ...What is the benefit of the 12-hour fast at night?. Thx!

Welcome, Rhonda. My mom was diagnosed at 76 and told she would have 3-5 years. I think the age and overall health going in make a big difference in the trajectory. Mom had a u-step walker (they’re great! Made for PD so reverse brakes) within 6mos and a wheelchair a year later. She can still walk but it is clearly a struggle now. Do things you love and make the most of life! But also plan ahead (she had to move states to live with my family bc her house - and husband, frankly) wasn’t an ideal situation for safety and stimulation. Keep coming back, keep asking questions, and keep (some) hope, always some hope if you can muster it!

Look forward to hearing more from you!

Big hugs,

grace

Welcome to this family Rhonda, you will find huge emotional support and information on this amazing site, you will be able to express all of your hopes and fears here with no fear of being judged. My husband was diagnosed over three years ago and this site has helped me along this journey whilst helping and caring for him. I honestly don't know what I would have done without the support of the lovely people here.

Much love Kate xxx

Rhonda838
Rhonda838 in reply to Katiebow

Thanks Kate... my dear husband is my caretaker we are just starting out... 🙄 so far I’ve been doing pretty darn good except for my falling some weeks seems to be getting worse and then it will turn around and I feel really good... not much falling either! It’s crazy! Then after my I talked to my doctor oh the phone I was very up set she said it was time to get a wheelchair... well for one thing I think I’m going to start using a nice walker that I have... first before I ever think of a chair ! My house isn’t big enough for 2 chairs. My son is in a chair!

aliciamq
aliciamq in reply to Rhonda838

Your son is is in a chair!!!!! Chihuahua!!!! Been there. Be smart and use your stuff - as a mom, you don't have time to get hurt falling!!!!! take care and just Wait till you get in a conversation about neurologists😆

Rhonda838
Rhonda838 in reply to aliciamq

👍😜

Hi Rhonda, welcome, so sorry you have been diagnosed with PSP but you have come to a great forum. I look after my husband who is 68years and was diagnosed in 2014.

Lovely photo.

Best wishes Nanny857xx

Rhonda838
Rhonda838 in reply to Nanny857

How is your husband doing!?

Nanny857
Nanny857 in reply to Rhonda838

Not too bad. His voice is quiet and speech slurred. He goes to speech therapy but getting him to do the exercises at home is a battle. His downward gaze is not good, he finds steps/stairs difficult to manage and it's a problem at mealtimes too. He can still eat most foods but is inclined to put too much food into his mouth and ends up having a coughing fit. His eyes are sensitive to light so he wears sunglasses. His movement is very slow and he shuffles along, and his balance is not good a lot of the time. Needs help when sitting down and getting up from a chair, getting in and out of bed and the car. I think he will be needing a wheelchair in the not too distant future for his own safety. His OT tried him with a walking stick and rollator but He couldn't manage them. He seems to get confused at times. He likes football so I take him to see his local team on a Saturday when they have a home match.

How has your weekend been? xx

You are beautiful.

Hi Rhonda... Just seeing this post for the first time. Kevin and the others are right about your personal contact information... there`s just too many trolls out there. Welcome to the group, wish it were under better circumstances. I recall similar words when I joined as a PSP patient. There is plenty of support and many words of encouragement. Frustration and anger too. it`s often said that there are two sides to every story... you`ll find that here.This is PSP real time xx

Rhonda838
Rhonda838 in reply to daddyt

Hi daddy’s we really must talk

Dear Rhonda, you are fortunate to have found this sight early, my husband has PSP and CBD and has been in a clinical trial since May. My advice would be to contact your nearest University teaching hospital Neuralogiy dept. as there are trials starting all over the U.S beginning again in the spring. His disease has not progressed since he began the treatment.

We found the occupational therapist to be most helpful in organizing our home to make it easier to get out of bed on his own, equipment needed and any other need that came up. Good luck.

Donna

Rhonda838
Rhonda838 in reply to Donnasue1

Thanks Donna I guess I should probably look into getting these things done early around the house

Hi Rhonda, welcome to our site. As others have said, we are mostly carers on here, we welcome you with open arms. you can provide a much needed voice for the other sufferers who are not able to use this site. Your knowledge will help others care for their loved ones.

My one bit of advise it fight the physical symptoms as much as you are able. There are classes for people with Parkingsons, that do help with PSP and they are fun to attend. Concentrate on what you can do, not what you can't. I don't know what stage you are at, but right at the beginning of Steve's journey, he had a knee operation. That's when I started being involved with his physio. One thing I was adamant about, was learning and practicing how to get up from the floor. This was just before diagnoses, before we learnt the horrors of all the falling. It helped us no end. Steve managed to get up from the floor, with a little help from me, for a long time. By practising, we were able to change the ways he could get up, to suit his ability and not wait until crisis time. Kept us amused for hours on end, nothing like rolling around on the floor to induce a fit of the giggles!

Lots of love

Anne

Hi Rhonda38,

I am an avid reader of all the posts here, but I haven’t contributed a lot yet. I am like you a psp Patient myself, and I do agree with everyone here that excercise is most important. That:s why , when I was first diagnosed in 2011 ( 7 years ago already, where does time fly to?) I wanted to have a dog for mybirthday , Because that means going out on daily walks. Come rain or shine... so we got a lively Labrador pup.who by now is almost 6 years old,that was the best birthday present ever..

So yes, I still walk every day, even though I have become much slower and even thoughI caN’t Walk that long anymore.

My PSP however,seems to be developing exceptionally slow, my biggest worry is falling. I’ve had quite some nasty falls over the years and I just hope I won’t be fallling too badly one day.I've just started participating in double blind test with a pill which should help preveting falls. It is too early yet to tell, whether I’ ve got the placebo pill or the real one, but I’ll keep you posted. For the rest I seem to have the same symptoms as so many others, like soft speech, sometimes,slurred as well,stiffness.

I had problems keeping my eyes open, but that has become much better after a so-called ptôsis opération, where the surgeon shortened So to say, my eyelid muscles, really an esthetic operation , But quite effective ....

Anyway, keep us posted on how you are coping, and don’t be shy about anything,this is the best site ever ,

Love and bon courage, Anne Baer

It’s so nice to talk to someone that has PSP... I find eyes looking down are getting worse for blurry vision. But some days are way better then others. Do you take tour dog on a leash? My sweet doggie would pull me down in a ♥️ beat! 😂 do you have a shaky leg. It’s not a tumor but it’s hard to explain... plz keep in touch

Rhonda 🍀🐝

Your story makes me feel happy 😊

HI Rhonda I am sorry you have this awful illness, but the people on this site are just the best in the world. They give each other such support and advice. And lift your spirit when you are at your lowest. My husband has PSP but I come on to read the posts mostly and that gives me strength to support and deal with the horrible situation of it all. You look great in the photo by the way. Welcome.......

Ladyalone

Hi Rhonda

Welcome to the forum. You sound a very positive person which is great! I hope you don’t mind but I do have a strong piece of advice for anyone in the early stages of this disease. Do please put in place a health power of attorney with the person you trust the most - and check on the likely progress of the disease and draw up an advance directive (send a copy to your doctor). This should include pointers about feeding tubes, the kinds of medications you want/don’t want etc. My mother did not do either of these things and so we are now in a horrible position of trying to guess what she wants as she cannot make her thoughts known.

Blessings to you and your family and take care of yourself

Mary

Now I’m not positive thanks

I echo the advice of marysmother. Plus you need to have the conversation about end of life wishes and DNR well ahead so it can be filed until needed. The doctor was so relieved to hear we had made those decisions.

love, Jean x

Welcome to the forum,read and reply to the posts,stay positive ,get plenty of support at home,for you it's a start of a journey, my wife Kathy is in her 4 year of psp.with lots of love from us on the forum will help you xx Peter& Kathy

Hi Rhonda,

Sorry I just saw your post but wanted to respond. I too was diagnosed with Psp a year ago and at that time I started with a physical therapist 2X week for an hour & I am convinced that has helped more than anything. I live in Oregon where a clinical trial will start this summer & I will be included if the results of my tests are positive.

I have fallen many times, use a walker all of the time and use a wheelchair when a lot of walking is involved.

This is a wonderful site with many caring people contributing advice. I welcome you but am sorry you are experiencing this diagnosis. It really sucks that our lives have changed like they have.

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