Newly Diagnosed with PPMS

[alsorenson]

I'm 70 years old and have been diagnosed for less than a year. Mobility problems, cognitive issues and fatigue have all gotten worse over the last few years. There's not much information about ms and folks my age. I'm looking for advice about managing the beast.

[goatgal]

Thirteen years ago, my 70th birthday gift was a diagnosis of RRMS, though not then, nor since, have I had a relapse. In the 30 years prior to diagnosis, I'd had only two. So I'm not sure what form my MS has taken, (or what label to give it) but I am on a long slow slide, losing abilities I once took for granted.

I hate to say welcome to our community, because it's one that none of us have eagerly joined, but it's a safe and supportive place to vent, ask questions, and meet others who understand this disease that is both visible and invisible. Come back and tell us more about who you are in addition to someone with MS. We share our hobbies, our gifts, our talents, and our joys...and as much laughter as possible.

[alsorenson in reply to goatgal]

Unti your kind response, I was the oldest person I knew with ms.I will take your advice and tell the community more about myself. For instance, I like baking bread and have to start the oven now to bake a loaf that's been proofing overnight.

More to come.

Thank you so much for your response.

[goatgal in reply to alsorenson]

Like you, I bake bread, make yogurt and cheese...and when the weather cooperates, grow many of my own vegetables. I stay as active as possible and try not to focus on what I've lost. I want to see every day as a gift, no matter how it is wrapped!

[NorasMom in reply to goatgal]

Now, really. The least you two can do is invite us all to a bread & cheese party! Can we have homemade butter, too? 🤪

[kdali in reply to NorasMom]

I'm down! 🎉

[PWilli in reply to goatgal]

Mmmmgood! I can almost smell it baking. Just let me know time and place. 😋

[ahrogers]

If you haven't already been referred to physical therapy you need to ask for it. Getting the right e exercises to do to help maintain what mobility you have is very important. The exercises may improve your mobility somewhat as well. There is also an online exercise program called MS workouts that has exercises for each mobility issue, ie foot drop, hip flexor, etc. It does cost money to join but does have a good program. You can find free exercise videos on YouTube as well.

Did your neurologist discuss Ocrevus? It is the only DMT currently approved for PPMS. I have been on it since 2016. I haven't had any new lesions since then but am slowly losing some mobility due to the lesions I already had.

Also, managing any other health issues you have, not smoking, eating healthy and alcohol in moderation will help.

My best advice is to not have the mindset of giving in to MS and sitting back and accepting what it is throwing at you. Fight back through all the ways I described.

Sorry that you joined our "club" but please come back and ask any questions you have.

[alsorenson in reply to ahrogers]

Thanks so much for your well informed reply. I had my first course of ocrevus in June. I'm concerned about the potential side effect of adverse effects to my immune system, but it's the only way I could see to potentially slow my disabilities. I've also just finished physical therapy. The therapist was very knowledgeable about ms and she helpeda great deal.

Now I'm beginning to work through/develop a daily weekly routine to get things done around the house and take care of personal obligations without wiping myself out either physically or mentally. Before this, I never considered that fatigue could be such an important aspect to manage. When over tired, it seems to amplifies other symptoms.

I really appreciate your well informed response. You remind me of my physical therapist.

[ahrogers in reply to alsorenson]

Sounds like you are getting great care from your neurologist. Finding the new normal and ways to manage your day to day life with it definitely takes some adjusting. Glad you are figuring it out! Fatigue is the most common symptom in MS and does vary day to day, hour to hour.

[whwiechm]

Unfortunately, there are quite a few of us onn this site that are over 70 (I'm 75), so this group will be able to understand what you may be going through.It may be a b@!%h but you can find a way to manage it, or at least live with it.

[alsorenson in reply to whwiechm]

Until this forum I thought I was pretty much alone. Thank you so much.

[whwiechm in reply to alsorenson]

You may find other people around you with MS that you never knew about. Also, you have a local MS support group that meets weekly or monthly that may be able to help you navigate through this disease. Lastly, the MSAA website is a great resource for help. Best wishes to you.

[Jesmcd2 CommunityAmbassador]

Hi and welcome! Pull up a chair, and have a look around!🙂 As you can tell we have people from all over the MS Spectrum and of all ages! But were a good bunch! Yelling, screaming is allowed, venting always! No politics, but if you ask for prayers, you will get them! Support is always here somewhere! 🤗💕🌠

[kdali]

Welcome!

[AquaZumbaFan]

Sending you a warm welcome from another person that never expected to join a forum but is just so happy to be part of a group of people who " get it" ..I have had RRMS for many years but May be on the cusp of SPMS.. time will tell and keep moving until your can't! Aqua classes at the local gym have helped me significantly.. starting slow and building up.. many co insurances offer silver sneakers for free ..🙏🏼☘️💐

[alsorenson in reply to AquaZumbaFan]

Thanks to everyone for the warm welcome. I have some very close friends that are important to me and are very supportive. But, they don't understand the daily challenges we face. I'm looking forward to being part of this group.

[Mollyabigail]

Welcome, alsorenson! You are right - not a lot of info on seniors & M. S. But, life goes on. Differently. I will be 63 in a few months, and almost 3 years since my diagnosis. We are so happy that you found us, but sorry for the PPMS. Blessings from Mississippi.

[Raingrrl]

Sorry you’ve joined the club no one wants to join. There is a wide range of people here so you will find all sorts of experiences. I’m 66 and still “labeled” as RRMS. I do a lot of things to try to keep it that way but, as you’ve discovered, there is not a lot of info about people in our stage of life with MS. You’ll also find out that most drug trials cap the upper end of the age range at 55 so any drug we try can be a roll of the dice.

One of the credible MS research centers that actually does study MS and aging is the Rocky Mountain MS center in Colorado. Here is a link to an article from them about MS and aging: mscenter.org/article/growin...

[alsorenson in reply to Raingrrl]

Great article! Thank you very much. I'm struggling with the pacing part of daily life. I know I have to pay attention to what my body is telling me, but it's hard to not do things around the house and yard that I've always done before. Not in denial but learning the physical cues to back off and and rest. Trying to break tasks into smaller bites, but not always successful. But I'm trying to learn limits and asking for help. (that's hard for a stubborn old fart like me)