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

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I have PPMS.

MrB51 profile image
21 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.

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21 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 tofalalalala

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 toMrB51

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 tocarolek572

Thank you. I'll keep in touch

MrB51 profile image
MrB51 in reply tocarolek572

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

carolek572 profile image
carolek572CommunityAmbassador in reply toMrB51

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 toAquaZumbaFan

I miss playing golf more than anything.

AquaZumbaFan profile image
AquaZumbaFan in reply toMrB51

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 toHelpmeup

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 towhwiechm

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 🕊️

MarkUpnorth profile image
MarkUpnorth

Okay, I gave up golf not because I couldn't physically, I never had the time working 80 hour weeks for decades. Forget the golf for a second. Look at what you have gained after loosing it to M.S.!

I'm still going with M.S. for over 30 years now. I can again walk, not run, but walk, UNASSISTED AGAIN! Okay, handrails on stairs, a definite do them. The power driven lawn mower is a fantastic power walker that let's you accomplish the lawn work! Who would have thought you'd ever like mowing the lawn again? Or be controlled by a wrist step counter?

I am on no meds anymore. Do the healthy eating thing. And avoid all processed foods. Still working on the very long list that came with my M.S. package.

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