Extreme Weight Loss

[Bellinghamster]

Hello everyone!

I haven't written in a very long time -- Douglas has been in and out of the hospital with one thing or another. His latest is extreme weight loss. He is down 100 pounds since June 2008. The doctors have done all sorts of tests -- you name it and he has had it -- and nothing shows up. So, for all of you other PD heros -- is this just another aspect of the illness? He is experiencing very low blood pressure and ended up in the emergency room. It never did go up above 80/43 -- but they sent him back to his assisted living home. I am keeping a very watchful eye on him. Douglas has fallen a few times and I think that is because he is trying to get out of bed in the middle of the night and is drowsy and then the blood pressure really drops. What a mess! The assisted living place has rails on the bed, but he is an ex-Marine (Semper Fi) and nothing seems to keep him down. What a critter.

I hope this finds all of you well and happy. I have to express how excited I am that as of January 20, 2009, in America we have a new lease on life -- and maybe stem cell won't be considered a "bad" thing!!

Keep the faith and know that I have all of you in my heart and prayers.

Hugs,

Brigitte

[Pauline]

Hello everyone!

I haven't written in a very long time -- Douglas has been in and out of the hospital with one thing or another. His latest is extreme weight loss. He is down 100 pounds since June 2008. The doctors have done all sorts of tests -- you name it and he has had it -- and nothing shows up. So, for all of you other PD heros -- is this just another aspect of the illness? He is experiencing very low blood pressure and ended up in the emergency room. It never did go up above 80/43 -- but they sent him back to his assisted living home. I am keeping a very watchful eye on him. Douglas has fallen a few times and I think that is because he is trying to get out of bed in the middle of the night and is drowsy and then the blood pressure really drops. What a mess! The assisted living place has rails on the bed, but he is an ex-Marine (Semper Fi) and nothing seems to keep him down. What a critter.

I hope this finds all of you well and happy. I have to express how excited I am that as of January 20, 2009, in America we have a new lease on life -- and maybe stem cell won't be considered a "bad" thing!!

Keep the faith and know that I have all of you in my heart and prayers.

Hugs,

Brigitte

Hi Bridgitte
Thank so much for the up date on douglas, but I am so sorry to hear what a rough time Doudlas and you have had you both continue to be in my prayers Pauline:):):)

[Janice]

Hello everyone!

I haven't written in a very long time -- Douglas has been in and out of the hospital with one thing or another. His latest is extreme weight loss. He is down 100 pounds since June 2008. The doctors have done all sorts of tests -- you name it and he has had it -- and nothing shows up. So, for all of you other PD heros -- is this just another aspect of the illness? He is experiencing very low blood pressure and ended up in the emergency room. It never did go up above 80/43 -- but they sent him back to his assisted living home. I am keeping a very watchful eye on him. Douglas has fallen a few times and I think that is because he is trying to get out of bed in the middle of the night and is drowsy and then the blood pressure really drops. What a mess! The assisted living place has rails on the bed, but he is an ex-Marine (Semper Fi) and nothing seems to keep him down. What a critter.

I hope this finds all of you well and happy. I have to express how excited I am that as of January 20, 2009, in America we have a new lease on life -- and maybe stem cell won't be considered a "bad" thing!!

Keep the faith and know that I have all of you in my heart and prayers.

Hugs,

Brigitte

Hallo Brigitte
So sorry to hear about your husbands plight. I also know how difficult it must be for you, I watched my mother care for my father who had PD for many years. He sounds a bit like Douglas too, he was a real fighter. He had many many falls because he was determined to do things for himself.
He also went through a period of temporary extreme weight loss for no apparent physical reason. Thinking about it now I'm sure it was emotional stress that caused it. My father found it very difficult to accept the care he needed as his PD progressed. He was frustrated and angry at losing his indepence. He just kept fighting.
The up side to this story is that it lasted probably six to eight months only before he started to gain weight again, I think he realised he was fighting a losing battle and began to accept the help and care he needed willingly.
I too have PD and pray that there will be a cure, thats what keeps me going. This week in Glasgow they are experimenting with injecting genetically modified stem cells directly into the brain of patients who have suffered a severe stroke. I eagerly await that outcome. I will keep you posted.

You obviously have a good spirit and care well for your husband he is a lucky man. All us Parkies need someone like you to help us get through.
:) Thankyou from Janice :)

[Juanita Mullin]

Hi Brigitte,
thank you for updating us on Doug. I have wondered about you folk. I will continue to keep you in my prayers. Juanita

[Bellinghamster]

I want to thank all of you who have written notes. I visited with Douglas this evening with our super dog, Fremont! We had a good time. Everyone at the assisted living facility loves it when Fremont visits -- dogs are just great friends to have. He has kept me going on the days when I start to feel sorry for myself because PD has taken my best friend and husband of 30 years. But together we will get through whatever is in store. Douglas has not given up nor have I -- you never know when a cure is just around that corner and I certainly do not want to miss that day.

Douglas continues to lose weight and I think it is mainly because he is finding chewing and swallowing more and more difficult every day. A feeding tube has been suggested by his neurologist but that won't happen -- Douglas is very adamant about that! Of course that could change as well.

OMG -- he is getting an electric wheelchair! Look out -- he will be the Hell's Angel on the Quantum. He even picked out "electric blue" as the color. You should have seen him "test drive" the different chairs. I am glad to hear that the assisted living facility has a speed limit of 1 mph -- but I also know Douglas. Wheelies and burning rubber will be his next task. I will get many phone calls from the director (almost like getting calls from the school principal). Life is full of surprises and as long as we can smile about the new things that are happening the rest will follow.

We both know the day will come when his body will finally say enough is enough. And we are planning the biggest and baddest party! Music, food, and only the best will be invited to celebrate the life of Douglas. I only want the people that influenced him and those who were blessed to have him as a friend. Wonder if the White House ballroom will be available??? He has many, many friends who adore him -- not to mention grandchildren!!

Douglas and I are designing the invitations this weekend -- a funeral by invitation -- who would have guessed? Hey, it's his party and he can do it as he wants!! I'm just glad that we can talk about this and plan together. Hmmmmm, not sure which band he will chose, but let's hope they are available!

Again, I thank all of you for being here and for your support. Know that we love all of you and you are in our prayers.

Hugs, peace, and strength,

Brigitte

[suzie Q]

Hi Bridgett.

Lookout you wont know where douglas is when you visit him,with his electric wheelchair.i hipe that he starts to put on some weight soon .never give up there is always hope for that cure we are all waiting for it could just be round the corner .Thinking of you both.

Sue

[Juanita Mullin]

Hi Brigitte,
I hope it is for you like it has been for my sister-in-law. The doctors knew she was going to die and had her on hospice. She and a son planned her memorial celebration. But she is going strong now--healing where the doctors said it was an impossiblity. She walks 4 miles an hour--I can't do that. We believe that God answered the many prayers going up for her. The doctor also said it had to be. We will continue pray for Doug. Sounds like he is a teenager the way he goes with that wheelchair!
Juanita:):)