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LouLou

Active member
Joined
Jul 11, 2011
Messages
91
Reason
DX UMND/PLS
Diagnosis
06/2011
Country
US
State
Washington
City
Woodinville
Diagnosed in June 2011. I had 3 appointments at the University last week. First one was for physical therapy, second one was to meet with a nurse to get more educated on PLS, and the third was a pulmonary function test. The PT thinks that it would be a good idea to get a walking stick to use when I encounter times when I feel I may not have the balance to get me somewhere. Otherwise my legs are still pretty strong. She also mentioned possibly getting a brace to help with the foot drop. The visit with the nurse was quite overwhelming and was glad my husband was with me. I asked about going off of Baclofen as it hasn't done much for me after being on it for 2 1/2 months. So I am weaning myself off and will see how I feel. Just can't see taking a drug when there is no apparent benefit. The pulmonary function test went well. The technician said for a 53 year old, my lung capacity was at 112% of the norm. He asked me if I sang or played a wind instrument? I said no, but maybe it's from screaming at my 9 siblings during my childhood! :) All in all the appointments went well. I have many mixed emotions right now... from sadness, to being mad, to feeling strong, etc. I am also going to join Weight Watchers this week and get these 30 extra lbs. off of me. I am concerned about falling (I have a few times) and the extra weight is not good. So I'm really going to try to get the weight off and exercise (treadmill and stretching). Many blessings to you all. LouLou
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
Hi LouLou! Are you diagnosed with ALS or PLS? Glad you're doing so well. Have a great evening!
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
Welcome Loulou,
So sorry you had to come looking for us in here. There are plenty wonderful people hear to help you on this new journey. ((HuG))
 

ScarlettK

Active member
Joined
May 27, 2011
Messages
85
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
TN
City
Winchester
Hi LouLou...welcome to a great bunch of loving, helpful, caring and compassionate group. I am also glad that you are seemingly in good spirits as well.
Ask questions and look around a lot here. May God continue to bless you. Kaye :)
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
City
NZ
Hi Lou Lou, you sound like my twin. :)
After the anger and fear, life does settle down a bit. The grieving process I suppose. When I got diagnosed, I jumped on a plane and just chilled for 3 weeks.
I have just lost 40 ils and it has made a little bit of difference. I didn't think so at first, but it's become obvious now I am away on holiday. Keeping active is also very important for people with UMN issues ( if you are able)
Nice to meet you again
Aly
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
606
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
Welcome Lou Lou! Sounds like your off to a good start! I didn't think the baclofen was doing too much till I went off it and was reminded of all the spastic fits I would have during the night that would wake me. So I mainly only take it at night so I don't get locked up in cramps. There are occasions I will take one during the day if I am having a hard time with spaticity/cramping because of over activity that day. But that is becoming rarer. I am also trying to loose weight, but its been a slow process for me since I can no longer walk on a treadmill or get in and out of the public pool using their ladders. So go for it now that you still have your strength! Take care!
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Ha! I'm one of nine myself. I'd recommend getting a cane to aid walking. I have one standing by but haven't needed to use it in a while.
 
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