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Topic Our life with Parkinson's Plus Go to previous topic Go to next topic Go to higher level

By seawench On 2012.02.13 19:32
I'll never forget the day the Dr. told us he suspected PD. We were blindsided by this. He was recovering from a rare adrenal gland tumor but not progressing as fast as we thought he should. Talk about a life changer. We went from recovering from an ordeal and getting on with life (we were preparing to sail around the world) to a permanent disability.
His progression was fast and he was later diagnosed with MSA so now we have a terminal dx to deal with. Every minute is precious, I'm so glad we have 34yrs so far together. Good days and bad days, it's all a roller coaster
I have a support group (for caregivers) this forum, great family (all out of town) and church community. I try not to dwell on how short a time we have or focus on the end. It can be tempting to think and plan for life after :(
We work hard to keep him in the best shape we can but I'm not going to beat my head up against a brick wall - it'll wear me down and then where would he be? I choose to pick my battles.
His body is letting him down, but he is still in there. Last Sunday morning got up off his scooter and stood in front of the congregation and honored me as his wife - not a dry eye in the house.
Our life will never be the same or what we thought it would be but I will cherish every moment, even the hard ones. I'm 52, he's 57 we are seven years into a dx that has an average range of 9-11 yrs.
You have to be strong and you have to be committed and sometimes that isn't enough.
You all are amazing and I appreciate your candor, strength, encouragement and wisdom- keep up the good work:)
Seawench

By karolinakitty On 2012.02.13 23:51
Seawench...I know how you feel.. I too am tempted to think or plan about my future, without my guy by my side....we have planned things out financially, but even then..it's hard

We have a PD plus dx also....he's 55, me 53...and 4 years into dxs...we can give the best of care and it's so hard to not wear ourselves down but we do....my guy too is constantly giving me praise and making me look so saint-like..but i'm not...just his best friend....I sometimes wish, and i don't want to offend anyone, that he simply just had PD...we would have more time together, selfish of me, i know, but with the plus diseases time expectancy is so much shorter...but the end is the same....

The best thing we do is look at each day as another gift of living together and doing what we can to make it the best of times....we've only been together almost 8 years now the last 4 dealing with this monster PD, but I can say it has been the best 4 years of my life...we may live like there's no tomorrow, but it sure can be fun!!!!!!
You may not be able to sail around the world, but i bet there is someone you know who can take for a ride around a lake or somewhere on a boat. we fish..and go out as much as we can..sometimes we don't even care about the rods...it's just getting out there and enjoying the water.....on our boat...we have a lock-down for wheelchairs..we did it because we used to take out wounded warriors fishing... a little ironic that we set things up for them and sometime in our future it will be used for him....we even have a friend who has a fighting belt set-up for guys who have lost limbs...he said he'd fix us up with one if needed....

I use a signature on all my emails:
Life is precious....Cherish every moment :)

By seawench On 2012.02.14 12:19
Thanks Karolina Kitty- Sorry about the MSA. I was a little hesitant to "appear" here because it's MSA instead of PD- but they are so much alike and there is so little support for MSA. I was in a cargiver's support group before we found out about the MSA and they were great about it - but you never know how it will go with other groups.
Yep MSA is hard and fast. I sometimes hope that is is too fast for some of the nastier stuff to show up. I know how you feel and wish I had another 20 yrs with him and yet at the same time becasue he has progressed so rapidly a little relieved that he won't suffer for years and years. Many PD's have 10 or more years that when their meds are right they don't have obvious symptoms. A man here in town just left the police force after 15yrs with PD (and he can still outshoot most of the rest of the force) But to live for 20yrs with advanced PD just blows my mind. No offense to any one I have a lot of duality about our situation - always trying to find the balance in life, emotion and care.
We are fortunate - we married young and are on our 35th year together. He's my best friend and my goal is to give him the best life possible for as long as possible and to be as strong and as healthy as I can be to be able to do that for him.
This summer we have access to a friend's sailboat and some friends (who are great with him and have traveled with us since he was disabled) that want to learn how to sail - Capt Bob will have a great time I'm sure and my heart will be blessed to get this joy back into our lives for a time. Hugs to you and your guy and thanks for all the things you post here it has been very helpful to us
Seawench

By karolinakitty On 2012.02.14 12:31
I guess I should have stated it wasn't MSA it was LBD(Lewy Body Disease) but they still aren't sure 100% that it isn't MSA or CBDG....We first got the PD dx, then after he progressed rapidly for a while there we got the LBD dx...I told them on the board here that, and that I should find a different forum. but...Lohengr1n, annwood, mylove and a few others on the board at that time told me PD is PD whether a plus or not and that I should stick around and I did...

There are differences in some aspects but all in all the same issues in general....hope you get that boat ride...I love the water!!!!!

By Reflection On 2012.02.15 09:54
Sailing is such joy. I discovered at the Post Office yesterday that there's a "forever" stamp of a Edward Hopper painting of a sailboat under way. I got many sheets so I'll get a little joy every time I put one on - well, probably a bill, but at least I'll think of sailing while stamping the bill.

On diagnosis and support - there's a huge overlap between different neurodegenerative diseases. They shade into each other, depending on which part of the brain is affected,by which mechanism (tau, alpha syneculin, etc.) and over time, they tend to converge, so symptoms that are characteristic of one appear later in the progression of other of the neurodegenerative illnesses. A diagnosis can be helpful in getting a rough idea of the progression, what symptoms/timing you can expect - but there are a lot of variables, and so much overlap.

So I hope anyone who finds this forum helpful feels welcome. You seem to have a great attitude, and that's key. It's sometimes hard to know what's best, how to handle it all - but the collective wisdom of this forum has helped me greatly in dealing with the challenges we've had. Good luck with it.


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