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Joined: Wed Oct 29, 2008 1:42 am
Posts: 5
Location: WV
Post Hello All
I am new to this forum & I talked with Mr. Manner to sign up. He thought it would be good to post what I wrote him on here. So here it is... Also, Hello to all as well!

I would like to join to forums to share my experiences and help others when I can & however I can. I have been to a couple conferences and been associated with a few other forums about LBD and PD. My father has been diagnosed with Parkinson's disease for about fourteen years now; it went missed diagnosed for a pinched nerve for about four years. He was only 41 when he was diagnosed having PD; he is now 54 years old. However, the PD has taken a backseat to the LBD which has taken over. He has been fully diagnosed with LBD now around four years I'd say. It has always been there, but never truly showed its face until a few years ago. Doctors say he is in the final stages. Nevertheless, as anyone knows with LBD you never know what tomorrow will bring. He has his good days and bad days.

I have also grown up taking care of my great grandmothers and family who had Alzheimer. My mother & I have always been my father's caregivers. However, my mother and I had to put my father in a nursing home about two years ago, due to horrible & violent hallucinations. We just couldn't give him the care needed at home anymore. My mother works in the office at the nursing home. Therefore, it worked out really well. He has gotten a lot better though! I actually got back my dad for awhile without the LBD controlling him. I get to see that sparkle in his eyes more than before; which was hidden behind the LBD mask for years. He is more like dad now still, very few hallucinations and none violent. Also, there are more good days than bad for the most part. However, more falls due to we had to take him off the PD meds to keep the mind as good as we can, for as long as we can.

I will admit I am only 22 years old; will be 23 in December. A few people think that is too young and I shouldn't be part of decisions & wouldn't know what to do. However, I thank my mother & father for raising me very well, and I matured earlier than most. I have been through A LOT with my great grandmothers, grandparents, and father throughout the years. I am POA & MPOA of my father and I believe all the things God has put in front of me to overcome have been for a reason. Maybe it is to help others, maybe it is to help spread the word of LBD, Dementia, & PD, or maybe it is just to make me stronger for other adventures down to road. For whatever reasons, I try to help and learn as much as I can about LBD & I will do the same here on the LDBA site. Sorry for not so brief writing. Sometimes I get writing and my fingers just keep on going. Also, sorry for my grammar and english. I am in college for engineering. Therefore, my English is defiantly not my strong suit! Thank you & have a good evening.

Very Sincerely,

Nathan Pursley


Thu Oct 30, 2008 2:24 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Nathan,

I see you are from WV. "Sue" is also from WV. You might try to find her in the membership list and email her directly as she doesn't frequent the Forum!

Sorry you've been through so much with all your relatives but this will certainly help you deal with your father.

Why do the doctors say your father is in the final stages? If he is, have you considered hospice? And has your father made all his decisions in advance regarding resuscitation, feeding tube, tracheotomy/respirator, and brain donation?

If he's not in the final stages, for treatment of LBD, have you read Dr. Brad Boeve's "Continuum" paper? It's on the LBDA website.

Good luck,
Robin


Thu Oct 30, 2008 1:29 pm
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Post 
Nathan,
Welcome to the LBDA forums, I am sorry for all that you have endured at such a young age but I have no doubt it will make you a stronger person in life, you are a little older than my own Son who also endured LBD in his life with his Dad and I know it has outlined his life in ways perhaps would have been different if not for LBD. I am sure you will be an asset here at the forums.

When my husband was in his final stages I was so concerned about my son and how it would effect him and the nursing supervisor at hospice sat with me and said he would be fine and the reason being I included him in his dad's care, and he was. I know he misses him but he is doing well. You mention God has put this in front of you for a reason and you are correct. We moved a yr ago and my son became involved with the Fire Dept here and just last night they told him they want him to be part of the Rescue dept and the Fire Chief told me that his real potential is with helping people, he still has one more yr of school but the offer has come for him to go to EMT school when he graduates and if he really does well to Paramedic school and I really believe LBD got him to this point in his life.

Is your mom with the caringspouses support group because the name is very familiar to me?

I wish you well and look forward to your input here.


Thu Oct 30, 2008 2:57 pm

Joined: Wed Oct 29, 2008 1:42 am
Posts: 5
Location: WV
Post 
Robin,
I'll will look up sue. Also, after my father went to the hospital and did a complete med change. It switched him completely it was defiantly a miracle if I ever could see one with my eyes. He was COMPLETELY different. It was like he got pushed back a couple stages or something. Sounds crazy and weird, but true... We have had all the prolonging life, etc taken care of years and years ago. He wishes no prolonging at all just to keep him comfortable is all we are going to do.

Also, He wants to do brain donation. My mother and I have been looking at universities and places for some time trying to figure out the best place. We want a place that actually does LBD and PD. If anyone has any information upon that subject we would be very thankful!

Irene,
I'm glad to hear your son has done so well. I'm sure he will do very well in the Paramedic school or the Fire Dept. My mother is in the caring spouses email group. Her name is Robin also. We actually got to meet a couple of people from that group at a conference in NC last April I believe when it was. Alice who's husband Russ had LBD. He passed away this month I believe mom told me. We met Jlynn who's husband Martian had LBD. He also has passed away a few months. They were both wonderful people! Meeting them made my mother's trip; it was nice for her to get to put faces to the people she writes to.

Thank you both & hope you have a good evening!

Very Sincerely,

Nathan


Thu Oct 30, 2008 5:54 pm
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Post 
Nathan,
I knew the name was familiar. I live very close to Jlynn, we had lunch a few weeks ago with another afterLBD gal names Pat. I am in SC.
Take care!


Thu Oct 30, 2008 7:30 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Mayo Jax has a large "PD and Related Disorders" brain bank. You can't go wrong.


Thu Oct 30, 2008 8:07 pm
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