I have PPMS.: I have PPMS. I take stock... - My MSAA Community

My MSAA Community

9,186 members20,915 posts

I have PPMS.

MrB51 profile image
20 Replies

I have PPMS.

I take stock every year of what I've lost since the previous year. It's been 20 years since I noticed the progression, but ignored it for years. I was an avid golfer. I first noticed that I couldn't hit my 6 iron (favorite fairway iron) like I used to and used to joke that I must have some disease. I relized my problem was serious when I began to walk differently and started to fall for no reason. After seeing 6 different (so called) nurologists who diagnosed me with ALS. I finally saw a 7th and 8th at Penn who understood my disease as MS.

As of today, I am wheelchair bound and have lost most left side function. I get mild to severe vertigo. My wife and I work together to dress and bathe me. Other than that, we are happily married for 51 years.

I don't go out any more because retro toilet facilities, ramps and doors are, for the most part, not per AWD standards.

Posts

Replies

Connections

Hi MrB51, it looks like you haven't written anything yet. Get the ball rolling by

Written by
MrB51 profile image
MrB51
To view profiles and participate in discussions please or .
Read more about...
20 Replies
falalalala profile image
falalalala

Welcome!

I found out that I couldn't hit the ball not long into my diagnosis. My husband took a photo of that meltdown which is my current avatar.

I laugh at it now but at the time I wanted to explode. I still miss golf but have since found many other things to get just as pissed off about! 😂😂

MrB51 profile image
MrB51 in reply to falalalala

My grandson has my clubs now and plays for his high scool team. I miss the game, but am happy the clubs are still swinging.

falalalala profile image
falalalala in reply to MrB51

That's great! :)

carolek572 profile image
carolek572CommunityAmbassador

Welcome to the forum, MrB51 . Yes, it has been almost 20 years since I was diagnosed. It took me about 10 years to get diagnosed. I get by every day but things progress slowly. No exacerbations as I have PPms. I look forward to hearing more from you. In the meantime, please visit mymsaa.org for resources to help you manage your ‘ms’. Keep Smiling, my friend :-D

MrB51 profile image
MrB51 in reply to carolek572

Thank you. I'll keep in touch

MrB51 profile image
MrB51 in reply to carolek572

Hang in there. Sounds like you are noy letting this bastardly disease get the best of you.

carolek572 profile image
carolek572CommunityAmbassador in reply to MrB51

I try not to, MrB51 , and you do the same as well! :-D

AquaZumbaFan profile image
AquaZumbaFan

Welcome Mr. B51!I used to hit golf balls with my sweet father and at one point played a pretty mean game of putt putt.. The closest to real golf I ever played was par three in lMyrtle Beach but I really did enjoy that! There are a lot of nice people on the site who are kind and funny… They often make you smile!

MrB51 profile image
MrB51 in reply to AquaZumbaFan

I miss playing golf more than anything.

AquaZumbaFan profile image
AquaZumbaFan in reply to MrB51

When was the last time that you got to play?

Xvettech profile image
Xvettech

hello & welcome!

Helpmeup profile image
Helpmeup

Hi MrB51, and welcome! Sounds like you had some very difficult challenges getting diagnosed correctly. I am wondering, after 6 neurologists said it was ALS, what made you keep seeking additional opinions? Good for you for not giving up until you were satisfied that you found answers. And congrats to you for 51 years of marriage! That is quite an accomplishment. 🙂

MrB51 profile image
MrB51 in reply to Helpmeup

I said I wanted the opinion of someone at the top of the field. He turned out to be a Penn neurologist. After testing, he called with the news. Instead of a death sentence with ALS, I had MS. He sent me to another Penn neurologist who became my MS doctor and a trusted friend.

whwiechm profile image
whwiechm

I was olnce able to golf a round at 75, then a second 75 for the back nine. Still, it was great to get out in the open for a long walk and enjoy the scenery. With the slow progression of MS, I can't even plat putt-putt anymore, but I still enjoy the open view of our backyard, Everyday life can still be enjoyable, even with MS.

MrB51 profile image
MrB51 in reply to whwiechm

Absolutly...I have my moments when MS stops me from being able to do simple things, but over all, I have never let MS get the best of me.

Peruzzot profile image
Peruzzot

Welcome to the group!

CatsandCars profile image
CatsandCars

Hi, MrB51. Welcome to the group!

Tazmanian profile image
Tazmanian

Welcome to the group

MrB51 profile image
MrB51

Thank you

Irishgirl76 profile image
Irishgirl76

I AM SO PROUD OF OF TAKING CHARGE AND KNOW I HAD EXACTLY THE SAME EXPERIENCE. KEEP CELEBRATING YOURSELF WITH LOTS OF FAITH. PEACE 🕊️

You may also like...

I think it’s PPMS

and I’m 44yrs old. About 18m ago I started to noticed when running my left leg started to ache...

Maybe PPMS?

Hi everyone,Like most of you it's taken a really long time to try and get a diagnosis and a plan. I...

PPMS and Unvaccinated Friend

dilemma and would like your opinions. I am 61 years old with PPMS. I am fully vaccinated. My...

PPMS Suffers

Hi all, If you suffer from PPMS I am asking that you follow me. I would like to follow you as well....

PPMS & Living my Best Life

course of that next 12 months it was changed to PPMS. I’ve tried several rounds of Solu-Medrol, in...