New Kid on the block here ...

[bazooka111]

Want to first say thank you to everyone that has contributed to this site. Although I have not posted before now, I have spent many hours reading all of your stories. I truly feel I’ve learned more here than anywhere.

My sweet Momma has been diagnosed with CBD, we are from Cleveland, Ohio and feel grateful to live close enough to have the Cleveland Clinic as an option. However, I am quickly finding out that each visit is much of the same - not much they can do.

My sweet Momma started showing symptoms (of what we thought was a small stroke) a few years back; shuffled walk, changes in handwriting, and pronunciation of words starting to change slightly.

It amazes me how us women can quickly put our lives on hold for everyone else.... because at the same time my Mom was experiencing her own health challenges, my father was diagnosed with cancer - my Mom focused 100% on his care. It was a battle for 18 months, she cared for him like an angel on earth. He passed away, her grieving has been significant, and I completely believed that once her duties for him were over —- this disease took its place at the front of the line.

Symptoms started almost immediately ... walking worsened, balance issues, she had started complaining about what we now call “trigger finger” - right finger sticking straight out. She started having a hard time finding her words, her cooking started to change, and she had a couple of small falls.

We ended up moving my 22 year old daughter in with her, while she attended school ... things have continued to progress.

So much has changed in the past two years since my Dad passed away. She had her last dance with my Dad in November 2016 at her 70 th birthday party —- and she brings it up as a reference point alot. Now ...Momma no longer drives, she uses a rollator, now lives with us permanently ....

So many changes, and how quickly you appreciate the little things ...

Wrote more than I ever expected ... appreciate this portal, and appreciate all of you that have contributed invaluable information. Blessings

[Hidden]

Welcome to the site. Sorry to hear your father died and now your mom has CBD. Must feel like the universe has it in for you. As you have read on here there are ups and downs with these diseases. It’s an emotional and physical roller coaster. Glad you found this place. It been a big help to me for the information and a place to blow off steam to people who know exactly how a care giver feels.

[bazooka111 in reply to Hidden]

Thank you - It’s bittersweet to be on this site for sure, but I am incredibly thankful to have found it. 🙏🏻

[Dadshelper]

Welcome to the site. Feel free to ask any questions you may have and make use of the search feature, lots of good info in back posts.

Make sure you find "me" time now that your mom has moved in, caregiving can be very rewarding but the constant grind can wear you down also.

Ron

[bazooka111 in reply to Dadshelper]

Thank you Ron - you are absolutely right; I am self employed, but I have found myself adjusting everything without even thinking about it - sometimes I feel like I’m hovering - my husband sent me for a massage last night one day at a time 🙏🏻

[Dadshelper in reply to bazooka111]

This little tip may help you some if your working from home and caring for your mom. Buy a wireless doorbell, it's cheap. The receiver plugs into an outlet wherever you are in the house, mom has the button. She can ring you when she needs something, help stop you from hovering

Ron

[bazooka111 in reply to Dadshelper]

This is a wonderful idea!! Thank you so much!!! Brilliant

[Sarah1972 in reply to bazooka111]

Be prepared for constant ringing later on 😉 xx

[grafixapn in reply to Dadshelper]

I have never thought of using a doorbell as a way of giving my wife the ability to get my attention. I'm not sure if you have followed any of my posts. My name is Andy, and my local PSP support group runs a website where we put what we feel is good information? With your permission I would like to add your great idea on our website. If you want to see what type of information we include, goto: supportpsp.com

Everything on our site is free, we don't ever ask for money.

Andy

[Dadshelper in reply to grafixapn]

Feel free to use it. I heard about from Dad's O/T, only he used it as a method to make sure his teenage child was awake on school days!

Ron

[grafixapn in reply to Dadshelper]

As luck would have it, yesterday was our local PSP support group meeting. I mentioned your bell idea, and everyone at the meeting responded how it fixed a common problem.

[Christine47]

Welcome to this site. Two others that are US based that you might consider are the smartpatients PSP forum, run by CurePSP. I have found BrainSupportNetwork, run by Robin Riddle also very good.

[grafixapn in reply to Christine47]

About a year ago my wife who has PSP and I were asked to be part of a question and answer program at a conference they had in Phoenix, AZ. At the time I was excited as my wife, once a doctor herself had read a study by a Dr. Moussa from the Georgetown University that showed a drug he had used with Parkinson's patients did extremely well. The drug removed tau from the brain. If you like you can look up his study.

My wife forced her neurologist to writ a Rx for the drug Tasigna. I asked CurePSP if I could speak about it at the conference; their answer was NO.

My background was in Accounting and Law, and when I watched the slides that were presented at the conference, I became concern. One slide showed that from conception to a finish drug the cost is $6,000,000. The second slide that concerned me was that CurePSP only will offer anyone doing research $50,000. $50,000 when compared to 6,000,000 is a joke. Having experience in forensic accounting, I went to the CurePSP website and reviewed their online profit and loss statement. If one understands how to hind money, what I saw was an organization that is only in the business of asking for donations. $50,000 for research is like spiting in the ocean. As for Robin, one needs to understand how she makes her income. Collecting brains for research sounds wonderful, but if brains are so important would we be asked to pay for providing them?

I'm just a caregiver for my wife who has PSP. There was a time when I had over 500 employees that I was responsible for. Today I only care for my wife and I'm failing at the job. I'm not trying to say that CurePSP hasn't done any good. They provide good information and awareness about the disease. However, their model isn't for providing a cure. Even the doctor CurePSP paired us up with was told he too couldn't answer any questions about Tasigna. One should never tell a doctor he can't do something. I wouldn't share his name but if you look up from the CurePSP website and look for the Phoenix AZ conference you will find a doctor with the Mayo Clinic. A doctor after talking with me and examining my wife has told us that he would like to start a study using Tasigna to treat PSP. The drug isn't a cure, but currently there have been 5 patients who are under doctor's care who have been prescribed Tasigna, and ALL have showed remarkable improvement. Tasigna isn't a cure, but it does slowdown the progression of PSP to a snail's pace.

One last thing. For my local PSP support group I manage a website supportpsp.com I invite you to see what we have posted. Unlike other so called non profits, we never ask for donations and we don't accept advertising. The information we provide is totally free. The fact is we ask for nothing,

I'm frustrated as I can fix my wife, as I have been a fixer for many years. I'm sorry if I popped you bubble as to what CurePSP is all about. There is a say that is still true: "Follow the Money.!

[bazooka111 in reply to grafixapn]

I appreciate this insight, and I will do some reading on all of this. It is disheartening, especially on this journey ... did your wife continue using Tasigna?

[grafixapn in reply to bazooka111]

My wife takes 200mg per day. With her doctor's approval she tried 400mg. That rurned out to be a disaster. My wife contacted Dr. Moussa at Geogetown University and he said he alao found increasing the dosage didn't work in his study. It helped that my wife waa a doctor too.

In a post I made about a month ago, I got my wife's neurologist to agree to talk with any doctor who has a patient with PSP. Dr. Samanta is someone you should have your doctor speak to. His phone numbwr is: 602-277-2245

One should never take any medication without the approval of a doctor.

What your doctor will hear is a doctor who wasn't a believer, but after prescribing Tasugna to a few PSP patients, everyone her prescibed Tasina to had improvements. It's not a cure, but it will slow the progression down to a snail's pace. I have supplies where I purchase Tasigna. The cost is about $700 per box of 28 capsules. The reason we went with the real drug was by accident. The price we were offered was less than the generic. Turns out that there is no control of the fillers used in the manufacture of the generics. Depending on which generic the absorption rate can vary.

I hope this helps. The website address is: supportpsp.com

If you have more questions, please contact me.

Andy

[bazooka111 in reply to grafixapn]

I appreciate this insight Andy -- I will share this information with our Doc - thank for being so willing to share.

[grafixapn in reply to bazooka111]

I'm just a caregiver like yourself. The reason the website came about is our local PSP support group meets every other month. At each meeting from 1 to 3 new people would show up. At first I would try to print out information we found out from prior meetings for the new comers. It got to be too much. It's easier to just have everything on the website.

One last thing. Feel free to contact whenever you have a question of concern. What you need to know is that I don't know everything, but I have been at this for now 3 plus years and I'm here whenever or if you need me.

Andy

[raincitygirl]

Hello Baz and Welcome

My husband had CBD and I have deep sympathy for all psp & cbd sufferers. Everything you do to make your mom's life as normal as possible is a gift. Bless you xxx

Anne G

[bazooka111 in reply to raincitygirl]

I’m sorry for your loss. I am still trying to comprehend all that is happening. After my father passed in February 2017, it seems like all the symptoms just positioned front and center. My Momma took care of my dad for 18 months - we had started neurology right before my Dads diagnosis of cancer, and my Mom put her medical needs all on hold.

It seems once my Dad passed, every symptom raised its ugly head.

Just the other day, my Mom said, “I wasn’t this bad before your Dad passed”. . .she paused for a moment... “we danced she said, we danced before he left” ... tears started rolling.

[raincitygirl in reply to bazooka111]

💔

[aliciamq]

Detroit here!! I'll be thinking of you and your family so close by!!

[bazooka111 in reply to aliciamq]

Detroit! We are neighbors ... ❤️

[Hidden]

Welcome!

It's not a nice place to find yourself but everyone here is so friendly and give better advice than any professional I've ever met during our journey.

You are not alone.

Take care

Sue x

[Ettavb]

Hello, from SE Michigan, my mother has CBD as well. We are quite a few years further along in it - but very similar first symptoms - including the change in cooking (she loved to cook).

[grafixapn]

I posted about a better walker foe those who have neurosurgical issues. The name of the walker is the U-Step 2 Walker. Almost all walkers require that the levers be squeezed to apply the brakes. The U-Step is always in brake mode, and requires the lever(s) be squeezed in order to go. Medicare will only pay for one walker per 14 months. In Phoenix AZ our local PSP user support group has a free website: suppprtpsp.com I invite you to read what we have posted. I believe it will answer a number of your questions, and help you with options. We never ask for money, and we don't accept advertising. The site only contains information.

I'm the caregiver for my wife. I have been doing this for now 3+ years. Being a caregiver is the hardest job one can have. I understand your pain, as I walk in your shoes. Having good information helps.

Andy

[Nanny857]

Hi Bazooka. Firstly sorry that your dad passed away and secondly that your mum has CBD. So glad you have found this forum where there is a wealth of information and helpful advice based on experience. Being a carer has good times but also very stressful and that's where this forum is a godsend. You can rant and scream and no one judges you as they have been there and understand what you are going through. Take care Nanny857 x

[bazooka111 in reply to Nanny857]

Thank you so much Nanny857 ... I am overwhelmed already with the outpouring of kindness ... grateful heart here

[NHGrace]

My mom’s psp was similar except she was caring for her baby brother who was in renal failure. While small signs were the before, the first big fall cafe shortly after his death. As did the apathy/depression, which seemed appropriate grief, but never left. He was her “person,” so I’m still not sure. I understand your ideas about the linkage. But maybe it was a welcome coincidence rather than cause. It’s hard to say. Love up on your sweet Momna all you can now! And come back to us often. Peace.

[Cianodude]

Reading your story..it could be mine..its like your writing about my own mom and dad..♥️

[bazooka111 in reply to Cianodude]

Interesting thing... I had already read your post a couple of days ago about the cannabis oil ... I, also just bought a bottle a week ago —- we haven’t tried it yet. I think I bought it impulsively, so I need to research more - still learning.

I’m sorry that we’ve met on here, and I pray that you’re surrounded with memories that you can find moments of joy in through this journey.

This whole thing is hard to wrap my brain around - I’m still numb that this is happening to my Momma. This season of life ... watching our parents age ... how quickly it all happens.

What I wouldn’t give to be that kid again playing In the backyard hearing my momma yell that it’s dinner time...

I’m blessed to call her my Momma and I will give back all the love she gave me and take care of her with every ounce of gratitude.

Will keep you in my prayers