Newbie: Hi, I am new to the group.My husband... - PSP Association

PSP Association
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lower
lower

Hi, I am new to the group.My husband was diagnosed with PSP in June 2018. He has had symptoms for the last 2 years and has had eyes tested/glasses,gone to balance clinics and when that didnt help a very diligent GP referred us to a neurologist who diagnosed PSP pretty quickly.He has an MRI scan next week .I wonder about trials and treatments that might work. We have just had a holiday in Mexico and are off cycling for 2 weeks in Germany at end August(all booked months ago). I am going to try Nordic walking as well.His movements are slower and more limited so cycling may well be tricky.So much of the below resonated with me. Just about got over the shock and now trying to understand what it means for day to day living?Should I stop work(I am in my 50's)? Should we start speech and physio therapy to slow process down?are there trilas or more advanced treatments anywhere in the world?

14 Replies
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Welcome to the site, sorry you are here though. There's a treasure trove of info in past posts and just asking questions, someone on the site has probably dealt with most issues you're going to encounter.

Exercise as long as it can be done safely, it seems to help most people. I'd not make any big changes to your life suddenly BUT you may want to read some past posts and get an idea of WHAT may be coming in the future.

As always I can't stress enough how important it is to get legal affairs in order, Power of Attorney etc, done. Start checking to see what types of medical/care support you have in your area. It is best to try and stay a step or 2 ahead of potential issues and be somewhat prepared but depending on events that may not be possible.

Ron

PS: since you planning to travel abroad I'd get a copy of your husbands diagnosis and carry it with you. If something were to happen on the trip at least the medical staff will have a base to work from and not have to "start from scratch" so to speak.

Welcome.

The best treatment, if not the only one, is exercise. Keep him active. Physical and speech therapy is a good idea as well. He may not have problmes yet but they will come. An occupational therapist coming into the home is good to get ideas of work around to assist him when you find it necessary.

Medications may or may not be of benefit. Everyone responds differently.

As Dadshelpers said get your legal affairs in order. Medical and legal powers of attorney. Advanced directives about resuscitation.

There are clinical trials for things if you want to pursue them. They can be searched on google. Depends on which country you live as to what is available.

Welcome.

Every one's advice is right but right now I advise you make the most of now. Make all the memories you can. PSP will intrude soon enough !!!!

love, Jean xxx

Welcome - sorry you have to join us but this is the place for info, help and support

Great that you have plans to travel - go for it. It maybe that the bike is currently a little easier than walking !!

Keeping active and strong core muscles helps in preventing falls and getting up from them!!

People with Parkinson’s apparently benefit from Nordic walking so this may also be useful.

Above all enjoy, have fun and make new memories

Love Tippy

Hi, welcome to this group. You are lucky to get a diagnosis so quickly, especially if he is still mobile. I guess everyone is different, but for us one day is good, and the next day suddenly different. We went for a hike when he first became symptomatic. He had fallen backwards a number of times prior to this hike, but within the next two weeks, he was wheelchair bound.

Treasure the time and take lots of pictures. For us, this whole thing has been a blessing and mystery. I am home with my husband full time, he has been able to bond with our kids, and before this he was working on rotation in the Arctic circle for a month at a time. But the sudden changes are staggering and doctors have done little where we live. Looking for the positives will help. I am just so glad for the time together as hard as it gets. This has made us a lot closer.

Hello Lower and Welcome to this site :-)

The advice above is good and I echo all of it to you. I believe exercise helps a patient stay at a higher level for a longer time. (My husband was still able to shuffle with a walker the day he died.) If your husband does things in the household that you may need to take over at some point, start learning those things now (finances, computer stuff, online accounts, etc.) If he has knowledge of photos, family genealogy or anything that you may wish you understood down the road, try to learn it from him while you can.

Most of all, as Jean said: Have fun! Make memories, help him gather great memories to enjoy once his life slows down and becomes much smaller.

Have a great trip :-)

Anne G.

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Welcome Newbie,

You will find this site incredibly helpful as you go through your journey. Everyone here is so kind and supportive and have been where you are now.

Rest assured whatever you ask, someone will have an answer for you and give you direction.

Take care and make memories now.

Big hugs

Sue x

Sorry you have had to join this site but you will get so much information. Just go for everything you can. Be careful of cycling as John could not stay in a bike as far back as 2012. Make sure you have things like wills and power of attorney in place whilst he is still able to communicate, it will make your life so much easier as the disease progresses. Also remember that this disease affects everyone differently , medication helps some but has had no effect on John. Pauline x

I joined this site just 2 months ago and have already learnt so much from others. Not just information, but also the need to laugh and cry with friends who understand.

You will not be alone on this journey.

Enjoy every day.

Juliet. X

Hi lower!

I'm sorry PSP has entered into your lives.

I hope and wish that the therapies that are being tested will be successful soon.

While we all wait for the "miracle" to happen I am sending you by private internal mail our experiences that I hope will be useful while a therapy is achieved that will stop and cure this disease.

Hug and courage.

Luis

Welcome to the site.There is a world of information here.I found that the medical community has so little knowledge of the disease,I was constantly having to explain what my husband had to medical professionals .I lost him to PSP a year ago.

My best advice to you is to take one day at a time,and that the disease treats everyone differently.As new problems arise you will find good advice here from others who have had the same.

Love and blessings to you and your husband on your journey.

Janet

My mother with PSP , now has continuing care, third attempt, we needed power of atourney, so a good thing to get sorted.

Take each day and make it special. As others have said the disease is different for everyone. Unpredictable and unsure. Try to enjoy each other and if you can stop working do it. Time is precious.

Cuttercat

Enjoy your time now as it is very special and a chance to create memories. Unfortunately these diseases are very cruel and th support from this diet will help you through the hard times. Enjoy your cycling and Nordic walking together very soecial time for you both.

Love Kate xx

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