Hi, all. I chimed in yesterday when a call was given for caregivers. That's me!
My name is Peter, and I live in the northern (and, now, snowy and cold) suburbs of Chicago, Illinois.
I'm in my mid seventies and am Susie's caregiver. I've been retired for about 10 years, but working harder now than I ever did in my regular working career. It's 24/7/365--and at night I sleep with one ear and one eye open, as I never know when I will be needed. I was in the graphic arts field in my working career, manufacturing envelopes and, later, I owned a small quick printing shop. That industry does not even exist anymore. Other than a bit of high blood pressure and elevated cholesterol levels which are controlled by medication, and an essential tremor (en.wikipedia.org/wiki/Essen... I am in pretty good shape (for the shape I'm in!). I'm a bit overweight, too. Round is a shape, isn't it?
Susie is in her low-mid seventies, was diagnosed with MS while in college, in 1964, when she went to the student health center because she had numbness in her extremities. After a spinal tap, she was sent home and the results showed MS. She was relapsing-remitting until several years ago when she was switched to secondary progressive (with occasional mild relapses). She's been on most of the injectable A-B-C drugs and has been on Copaxone for many years now. Except for the slow progression of the disease, we are mostly happy with her medication. She is, also, on many meds to help with the MS symptoms.
Many years ago Susie was asked to participate in a study for Pseudo-Bulbar affect (look it up at en.wikipedia.org/wiki/Pseud... ) and watched the medication for that come to market.
She also participated in the study for BOTOX injections in the bladder for urinary incontinence. She has had, at best guess, twelve to fifteen injections of BOTOX over the years (her last one just a week or so ago) and they last, for her, anywhere from three to nine months. It has been a God-send.
That's us. I'll think of more, of course, right after I post this, but you get the general gist of Peter and Susie here.
Welcome to the group Peter, Susie too. Kudos to you as you seem to have things under control as much as you can. I'm Lynn, and am 68. I was just given prelim diagnosis in August and was referred to UCSF for definitive testing and diagnosis. I was a caregiver for both my mother and mother in law, although not at the same time. Both had Alzheimer's. I wouldn't wish that disease on anyone. I can relate to the being on duty 24/7. I know I will be looking forward to you offering your perspective on our many questions.. My husband is my caregiver now.. Lynn
Welcome to the group Peter and Susie! We are glad to have you here. Peter your input will be invaluable to us as we go along. I was the primary caregiver for my mother, mother-in-law, and one grandmother at different times through the years. I admire you for sticking with Susie all these years! I know how hard it can be to watch a loved one struggle. MS and other chronic illnesses are great stressers that have caused many a couple to get divorced.
Hi Hidden it's wonderful to have you chatting with us here and I will look forward to hearing more from you--and hopefully other MS partners.
What a great relationship you and Susie have. she is very fortunate to have someone so caring by her side.
I know how key my partner, spouse, caregiver is to my wellness. And hopefully I reciprocate. We all need thoughtful care giving regardless of dis-ease.
Hi Hidden and Suzie We are so glad go have you both here! Your story gives us hope that with love and support, life can be good!
As LM sure you have Been told Peter, having a caregivers point of view. Is as they say priceless. As we often forget about, their needs. I know Im guilty of that. 😞
Suzie that's so wonderful that you did those study's. I always wondered if the botox for the bladder would work. Or how they work. I'm going to have to look that up ☺
Welcome, Peter and Susie. Thank you, Peter, for being such a caring and compassionate caregiver. As someone who puts up with MS, it's comforting to know that there's someone to be there for us, in all aspects of the fight.
I'll add another welcome to you both. You'll find wonderful support and many helpful ideas here. It's obvious you've had years of caring for another and years of experience which you can share here.
Very great to officially welcome you to My MSAA Community via HealthUnlocked, Hidden & Susie!
Your post was very thoughtful and informative, and it will be great to have such a unique caregiver's perspective as yours on this platform. And Susie's perspective is great to have as well, with her experience in clinical trials, disease-modifying treatments, and symptom management meds.
So thankful to have you both as part of our online community, and looking forward to your future engagement with all of our followers!
Welcome Peter and Susie! We love to hear from caregivers, and appreciate so much all they do for us. True heroes! Hope you come back again and again. Kelly xxx
I would like to add my welcome to the others. My husband is my wonderful caregiver. I was diagnosed 1 and 1/2 yrs. ago but I have had essential tremor for @ 15 yrs., to the point where I had deep brain stimulation surgery just over a year ago. It must be difficult to be a caregiver when you yourself are suffering from a disability. This site has been very helpful to me in the few weeks I have participated. I hope you and Susie will find it equally as helpful, if only to hear from others who struggle as you do.
You are a sweet man, Peter. I am mostly sure that your wife appreciates your care. I hope you feel that. I try to get my appreciation across to my husband and sometimes things can be so frustrating for the both of us . Love is a strong elixir for MS.
Please share your perspective , as many with MS need to understand the caregivers perception of dealing with difficult situations .
Hey, Good_Enough. Don't do that wife/husband thing to us. Don't spoil it! We're not married... we've both been there, had kids, and now grandkids. It works for us better this way.
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