Old Age and MS

By pippa

1 min read

I was diagnosed when I was around fifty plus.
I was on Copaxone for ten years.
It was quickly apparent to me that my MS specialist and the MS "nurse" at the hospital weren't particularly interested in me because of my age.
Now I am 77 and often I feel lonely and irrelevant, which is very hard as not so long ago I was active and social.
What happens to the older members of the MS club?
Is there a forum that I could join?
Years back I went to a group but most were in wheelchairs with carers......... I'm not, and felt out of place. Now I have a part-time helper...
When I can, I paint and enjoy my garden, bursting with flowers in spite of the intense heat. I enjoy music and sometimes opera.
I have a wonderful trainer once or twice a week often not.
It is a daily battle with depression.
Interestingly my family (6 grand children) live very close by........but I see them rarely. Not having the energy to cook or cope with the noise level means they are are here , but, not here.

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judyvarley Member
@pippa - I have had MS since high school and I am now 73. Glad to hear you are still active and doing your own thing. As we reach a certain age, medical professionals know there is truly nothing they can do. I am lucky, live in Canada for the past 24 years and was finally diagnosed 22 years ago. I have what is called PPMS which basically means there are no relapsing, remitting issues. PPMS came and stays and worsens as time goes on. My neuro isn't as actively involved as he has been in the past, but my family doctor is on the job and helps get whatever I need when I need it. I don't feel ignored and I am so grateful for that. Family issues are another thing. I have six sons, 16 grandchildren and 5 great grandchildren. My husband and I traveled back and forth over the years to the States to see my kids and grands, but as my husband is 83, traveling far from home is no longer feasible. We have a few good friends and realize that life happens no matter what situation we are in. Take heart in what you can do and want to do. I have a mobility scooter and when the weather is nice, I'm out and about. I still cook, clean, do laundry, etc., but way slower and less often then I used to and only a little bit at a time. 
1. judyvarley Member
 <inline-mention username="judyvarley" user-id="4104153"/> @pippa stay active always. When you don't, eventually you won't. That is my motivation always. Keep moving. It isn't always pretty, but it beats the hell out of the alternative.
kelseymidgett Community Admin
<inline-mention username="pippa" user-id="4065403"/> - Thank you for sharing your story! My heart goes out to you for the challenges your facing with your medical team and feelings of depression. Have you considered seeing another MS doctor? You certainly deserve attention and empathy from your team. I'm glad to hear you're painting, gardening, and training - hopefully things that bring you joy 😀 We're here for you to vent or share! Wishing you the best! - Kelsey, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> team member
Cathy Chester Moderator & Contributor
Hi <inline-mention username="pippa" user-id="4065403"/> and thank you for sharing your story. I was diagnosed at age 28 and I'm now 62. The topic of aging and MS has been on my mind for quite a while. I feel we are underrepresented in many areas and wish we had a strong forum where we could support and discuss issues that matter to us. I hope you find a doctor that listens to your needs because you are a valued member of society and should always be treated with dignity and respect. Please use your strong patient voice to get the care you so deserve. You are NOT NOT alone! On this journey with you, Cathy Chester AnEmpoweredSpirit.com
f5hwo4 Member
I was diagnosed when I was 55 I am about to turn 69. My neuro informed me at my last visit we wouldn't need to have me on a yearly schedule anymore. He would shave me come in if something changes. I keep up with the latest research and treatment but it makes you fill like you don't matter or exist. Potter
1. kayleighhill Community Admin
 <inline-mention username="f5hwo4" user-id="3977349"/> That you for sharing this with us Potter. I think many in this community can relate to your words. I'm really glad you are here with us and a voice in this community. 🧡 Kayleigh, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> team
rodger Member
I was 45 when I was diagnosed with PPMS and I didn't know what that ment. But now I'm still surprised with what can happen. I am now in a private hospital and in a wheelchair because my wife is unable to help me any more. I quite understand that feeling as she also dealing with PTSD from a rotten early life.
1. rodger Member
 <inline-mention username="Lori Foster" user-id="4035613"/> Thanks for the reply. I am getting to use this place, I've been here for 4 months and still getting use to it. They have been good for me, and making me more comfortable and I do get the attention I need.
2. Lori Foster Member
 That is so good to hear, <inline-mention username="rodger" user-id="3946550"/>. I hope you are still able to get some fresh air sometimes and maybe even leave the hospital for a few hours now and then. Thinking of you. - Lori (Team Member)
joannmaxwell Member
Yes, you are not alone. I was diagnosed with PPMS at 60 and I’m now almost 69. A lot of symptoms were misdiagnosed along the way. I also have a four wheel scooter so that I can keep up with my family. And friends. I have to be careful that I don’t do too much in one day and then make sure I take a day off. I also use a disability shuttle service that helps me get out and about. Even it’s if it’s just a grocery pick up, it gets me into the fresh air and around people. Hang in there! Be creative and how you can make things work! Maybe a short project with your grandchildren and then take a break to recover. Just a thought!
1. Lori Foster Member
 It sounds like you have devised a good system for making the best of each day, @joannmaxwell. I am glad you have access to a shuttle service for people with disabilities. That must give you so much more freedom. Sending the best of all wishes your way! - Lori (Team Member)
tess0714 Member
I empathize. DXD at 50. Never worked again. SSD accepted me. On my own. Son and wife nearby, but swamped in their own lives. I’m pretty much alone, but I don’t mind my own company. After a dangerous 29 year marriage, being alone is a gift. It does get lonely, but I dive into a great book, have my cat and I’m ok. 
1. Lori Foster Member
 Books are the best, aren't they, <inline-mention username="tess0714" user-id="4091720"/> ? They can take you anywhere and cats are always willing to come along for the ride. Please know we are here for you whenever you need us. Best wishes and happy reading! - Lori (Team Member)
2. tess0714 Member
 <inline-mention username="Lori Foster" user-id="4035613"/> thank you!!
grit Member
MY SISTER AND I ARE 1 1/2 YEARS APART AND BOTH GOT MS AT THE SAME TIME. WE NEVER SHARED A COMMON ISSUE.
1. Lori Foster Member
 Wow! That must have been shocking for both of you, @grit. Has your MS progression followed similar paths? Does it help to have each other for support? My heart goes out to both of you. - Lori (Team Member)